first chemo done

jill323

Hi, Debbie-

Welcome !  Yes, I know this can be a bit overwhelming.  It is like a whirlwind isn't it ?

I can tell you what you might expect based on my experience.  Yours is likely to be similar, but with some nuances.   Also, would you know your Her2 status ?  That will also make a difference as to which treatment you receive.  Being ER- usually does mean certain kinds of chemo regimens will be more appropriate for you than others because hormone blockers (things like Tamoxifen or AI's) would not work for you.   However, if you were Her2 positive, it means herceptin would be an option.  I know this seems like a lot.  If you have your pathology report handy, but plug it in here.   Your node status will also determine what kind of treatment you will get. 

Anyway, in the case of these docs... usually your medical oncologist (the one you call your chemo doc) acts as the "quarterback" for you.   He/she will coordinate all the regimens for you.  Typically you receive chemo before you receive radiation, but that is up to you doc and and the specifics of your case to really decide.   The radiology oncologist "designs" the radiation course you will take and will oversee that portion.

My strong advice to you because this is so overwhelming, is to write down all your questions before you go in.  I would ask things like:

Medical oncologist:  

1) What does my pathology say in terms of clear margins, and ER/PR/Her2 status ?  What do these things mean in terms of what treatment I will get ?

2) What is my recurrence risk and prognosis ?   How will the different treatment options lower my recurrence risk ?

3) What are the side effects and risks for each of these treatments options ?  (Just ask for the big ones like heart risks at this point - they will get into the specific ones when you get on a specific treatment)

4) What kinds of tests will you be asking for prior to treatment and why ?

5) Am I eligible for any clnical studies?

For the radiology oncologist

1) Why is radiation being recommended given I had a mastectomy (I suspect it has to do with your node status) ?

2) What does radiation do for my prognosis and recurrence risk ?

3) What is the treatment course you think I will under go ?   Why are you recommending tihs particular course ?

4) What are the side effects ?

Also, there is a wonderful site you can go to - The Dr. Susan Love site (I posted the link below), where you can put in your information and it will spit out a wonderful battery of questions you can and should ask your oncologist.  The ones above were the ones that I thought off the top of my head.   While this might seem like a bit much, I personally found the doctors to be quite amenable to the questions and very forthcoming.   Some docs will even let you tape record the conversations (some won't).   But, all of them told me they appreciate it when their patients come in with their questions written out.

Anyway, with this link below, go to the gray area on the right - the treatment option tool and click on the link.  It will have you sign up (it's all free) and then just follow the directions.

  http://www.dslrf.org/breastcancer/content.asp?L2=3&L3=2&SID=161

I hope you find this useful.   Take care.  If you find any of it confusing after your appointment, come back here and there will be someone that can put it into perspective for you. 

Jill  

Debbie1218

HI Jill,

Thank-you so much for taking the time to write all this out for me. It helps so much. I only know the ER- because I asked my sugeon. I didn't know- and frankly was so in shock from it all, that I didn't research to see anything about PR or Her/2 status. I've looked all over the pathology reports, and don't see any reference to it anywhere. I'll ask tomorrow for sure, and I have a tape recorder to bring. I started out just with an enlarged lymph node under my arm, the lymph node was removed, and the pathology report was undifferentiated cells, aggressive, invasive, adenocarcinoma. So a lot of time was spent trying to find my primary site. None of the mammography tests showed anything, and the breast MRI showed only 4 possible sites, with one more likely than others.The radiologist and tech spent 2 1/2 hours total doing the needle core biopsy, trying to find the right spot that showed up as a possible malignancy. Because the original lymph node was 5cm, and the breast malignancy was so small and hard to find, I was more afraid not to have a mastectomy. I was offered the option of a lumpectomy, with total lymphadectomy. But if this showed up first in my lymph nodes under my arm, and they were removed, it would be quite a while before a new mass would be found (if that were to happen)Thus, my choice of a mastectomy. Anyway, again, thank-you for all of your wonderful information. May I ask where you are in your treatment, and if all is going ok?

Debbie 

jill323

Debbie -

Hi again.  Seems like a good night to troll the site tonight !      

That is a heck of a story that got you here.   But, thank goodness this was caught.  I was just talking to another woman on another thread and told her that while this was not a club you wanted to join (no one does), once you are here, you are "family".    In addition, it sounds like you absolutely made the right choice.  One thing I learned early in this is to never look back.  Second guessing decisions you made simply is not useful.  

As for me... there never was a lump (If I ever wrote a book, it would be titled "There was NO lump").   I was diagnosed by simple screening mammogram in which they found microcalcifications - which I later found out are basically byproducts of dying cancer cells. They are dividing so quick that some cannot establish a blood supply which is why they die. 

When all was said and done, I had a lumpectomy and six nodes removed.  The lumpectomy showed two "clusters" of DCIS and one little, tiny (4 mm) cluster of IDC.  Unfortunately for me, the IDC ended up not being a very nice guy - aggressive little sucker given the markers.   For this reason, I ended up in chemo (despite the small size of the tumor and node negative).   My "young" age also played into this (I am 43 and LOVE when the docs call me young) as the risk for recurrence is higher the younger you are, and they figure the younger you are the more likely you can "handle" aggressive treatment.   However, I am on a fairly light regimen (as chemo goes) of Taxol and Herceptin - four rounds over 12 weeks.  I have finished round one and go back for round 2 next week.    From there I am onto radiation for 6 weeks (5 days/week) because I went the lumpectomy route.  After that, I go in for an infusion every three weeks until I complete a year of herceptin.

Things are going fairly well so far.  The chemo is not fun, but manageable.  As you can see from the posts above, I am shedding like a dog and have entered the phase of living in a hat.   For me the worst part of chemo is the fatigue and bone aches (bone aches are common with Taxol).   What keeps me going is that I know my prognosis is good, but that I want to keep this little monster from coming back.   What I am doing is the best thing in my arsenal to do exactly that.   You will find out that chemo is all about risk/benefit.  How much risk do you want to take for how much benefit.  It is a very personal call.  But, it is YOUR call- don't ever forget that. 

Anyway, when ever I start getting too overwhelmed, I just try to will myself back into thinking about the end game.  This is temporary and necessary - otherwise the damn cancer wins.  I am way too competitive and have too much good going on in my life to let that happen.  

In any case, I hope this is helpful.   Please feel free to contact me (even via private message if that is more comfortable for you) any time.  I look forward to hearing what your doc says !

Jill

Debbie1218

Hi Jill,

How do you manage work? Today is the first day since surgery that I've felt close to my old self. My work involves travel every week, and I cannot see how I could be at a client site 4 days a week feeling like I see how everyone seems to feel during treatments. I sometimes want to cry when I reach the wrong way for the stupid computer mouse. I truely repect those with the strength to do what I so far cannot. (I'm 54). I doubt they'll call me young . I'll let you know what the doc says tomorrow. Thanks again- you are a very strong, knowledgable 'young' woman .

Debbie 

jill323

Debbie -

Let's talk tomorrow after you talk with your doc.  I can tell you that I also work full time (in a relatively high level position), and do a fair amount of travel in my job (not every week, though).  

There are some strategies I have found that work for me in dealing with work - in dealing with colleagues, my managers and my employees.    What you do with work largely depends on your personal style (i.e. what you are comfortable sharing with others) and the regimen you are on.  It may surprise you to know that my docs have actually helped me plan out my treatments to deal with business committments.

That said, however, you will need to realize that YOU need to come first.   Work is work, but your health is the end game.    Focus there first and foremost.   To this end, work has become almost an outlet for me in that it gets my mind off other things for a while and it is nice to be productive. 

So... talk with your doc tomorrow to get a feel for what you might be looking at, and then let's convene to talk some strategies you can think about.   AND by the way, give yourself a little credit.  You made it this far.  You are stronger than you think.    AND - believe it or not - it is perfectly fine NOT to be strong once in a while.  We all need that too.

Jill

P.S. I think 54 is "young" ! 

Mocity

Hi All,

Quick note before I get off to work.  I had my first treatment last Friday and the next one is this Thursday.  The worst thing for me over the weekend was the fatigue because I coulnd't  sleep despite ambien!  Last night was better.  It is going to be a tough 12 weeks working full time but we will all get through it.  I am dreading losing my hair for sure.  I guess that is the next hurdle along with the next couple of treatments.  I will say that the office where I had my treatments was wonderful.  All the nurses so caring and nice.  I was a basket case and everyone helped me along.  My two cousins and boyfriend went with me wearing t-shirts one had made that say "Cristl's Crew".  Anyway, work is going to be tiresome today.  I work in a fairly high level position as well and need to be on my toes this week. I also have a family wedding out of town I need to make this Saturday.  Ugh. Good luck to all!

Cristl

kristifromsandiego

Debbie,

Everything about your diagnosis seems similar to mine except the ER-.  My first appointment with the radiation oncologist and the regular oncologist were just information gathering meeting.  They tell you what they think the best plan is based on your path results.  They give you a list of prescriptions for you to fill and the date and time to start the event.  I start chemo for the first time today at 10:00 am. I am on 3 drugs TAC, He will explain them.  But those he administers.  Yesterday I took 4 Decadron and then a sleeping pill because it really hypes you up.  This morning I take 2 more Decadron, and two more other pills for nausea and anxiety (which I definitely have). Then tonight 2 more Decadron.  The Decadron is like a steroid so it makes you hyper, so you have to be careful you don't over do. 

I am taking chemo for 6 sessions, every 3 weeks, it is the first part.   The radiation oncologists real part, for me does not come till after chemo.  She just explained what she anticipates my course of radiation will be, for me 5 weeks daily.  I hope this helps.

They looks at your breasts but no pricking!

Kristi-- keep smiling, we are on the road to recovery. 

jill323

Hello Ladies -

A lot went on today !

Cristl - How was the first day back at work ?  Did you do OK ?  (Great story about your "Crew")

Kristi - How was your first day of chemo ?  You doing OK ?  I understand if we don't hear from you for a while. 

Debbie - What did your oncologist have to say ?  Do you have a better understanding of what you might be looking at ?

As for me, I am still shedding like a dog and getting real tired of it.  Gearing up for chemo number 2 this Wed.   I hope everyone is doing well.

Jill

Debbie1218

Hi Jill,

Exciting day - or at least busy and tiring day for many today. Mine is definitely interesting. Initial visit was close to 4 hours. We had 2 phone call interruptions, 3 - I have to help with this new "??" we are doing interruptions, and a fire alarm that went off requiring evacuation of the building. My husband liked the doctor. I don't know that I really saw him enough to make that evaluation. Compared to my doc visits I had over the past 20 years in California- yes- this was better. But I didn't feel he was relly focused on "me" (rather obvious with all of the interruptions). Plus, he had never seen my chart until he walked into the exam room.

Anyway, I did find out that I am ER+, PR-, HER/2 -. (1.4). No word yet on whether I need radiation therapy. Evidently, the pathologist did not check to see on the 5 cm lymph node if any of the outer casing (physicians term) had been compromised by cancer cells. If there are any areas where cells could have gone thru, then yes, I will need it. If not, then no. But the pathologist now has to go back and relook at the tissue sample.

My question is: after cutting it, examining it, etc, how can he tell for sure? Not only that, since the cells were undifferentiated, I had asked for a second opinion. I believe he was upset about that, since I was told that an undiiferentiated cell is the same no matter who looks at it. Very basic, and that it shouldn't be sent out unless he knew other specialty tests would be done on it. So, after all that, he now has to re-look at it. Hmmmm.

Then the doc said he would take it to the tumor board. I reminded him that it had already been there once, right after the node was removed. He must have been out that day. And why don't they send over my complete chart? It's right across the street. he had the same faxed path reports as I did, except for the antibody tests, which I got a copy of.

I just felt discouraged, tired, tearful, and cranky after today. As you can see I'm not ready to sleep, but am so very tired. Guess I'll break out the Ambien they gave me for nights like this. If I don't have a better feeling for the medical oncologist, will be looking elsewhere, no matter what my husband says. Just because it's better than how we were treated in California, doesn't mean it's "Better" but I can't get him to understand that.

I did ask what advantage there was to me having radiation as to not, and he said about 5% increased 5 year survival rate. Well, personally- I think I want that 5%. Supposed to get a call in the next day or so, so we'll have to see what happens next.

Must say the nurse was good, but couldn't explain all the ER+, PR-, HER/2 - stuff. And the admitting girl was a sweetheart.

Debbie

jill323

Debbie -

Hi again.   I went to bed earl last night and did not get this until this morning.  This is quite a story.

I will tell you, though, typically I try to just support people and answer questions without opinions.  But, you happened to hit on a topic that is a sore spot for me and I am very opinionated about - and that is the relationship with your oncologist.  

So, here it is....  The relationship with your oncologist is ABSOLUTELY critical.  You are going to be dealing with this person for months on end, trusting that they are doing the best for you.    You might be interested to know that I also saw two oncologists - one with a real high brow reputation.  And went with the one that did not have the high brow reputation because the I felt she (the high brow one) was treating me via protocol instead of treating me.   I like my current oncologist because she is cautious but thorough, listens to all my nosy questions, and is willing to work with me.  She realizes that it is my body and my call.   But, helps explain results and options to me such that I can make that call.   

Net, in one of the rare times I will actually give an opinion of "what to do" - if you don't feel comfortable with this onc., go with your gut and find another.     You seem like a very smart woman.  I think I would trust your judgment.  (Personally, I would be appalled if the doc did not "remember" that you had already been to the tumor board  - I realize that they have lots of paitents, but perhaps that is the issue - he has too many patients).  

Also, you have a right to ask for ANY second opinion you want, including pathology.   I also did the same thing.  Did it drag this out - Yes.    Was I more sure of my decision - YES.  

OK.. will get off my soapbox now.   As for your ER status, this is good news for you.  However, did they say your percentage of ER receptors ?  This could make a difference in how effective some hormone blockers will be for you.    In my case, while I am ER+, it is pretty weak (22%), and like yourself, PR-.  (There are not too many of us ER+/PR- ladies around).  This is one reason they were a little more aggressive in my case.  My onc. says they are essentially treating me like I am ER/PR negative.   So, see if you can find out the percentage of receptors.    Her2 negative means herceptin won't do anything for you.    That is good news or bad news depending on how you look at it.   Good news - you won't have to take that drug for a year.  Bad news - it is a REALLY good drug for limiting recurrence risk of Her2 positive cancers.  

Anyway, I hope you are feeling better this morning.  (Xanax is my drug of choice when I can't sleep due to brain chatter).    Let us know where you come out !

Jill

P.S. Where are you located ?

kristifromsandiego

Jill and Debbie,

I am all with you.  IF YOU ARE NOT HAPPY WITH YOUR DOCTOR DO SOMETHING ABOUT IT.  I had a similar situation with my plastic's guy.  I had to remind him that this was my life, my boob and that we were playing with my rules with his guidance.  I love my team, my oncologist is a mad scientist but he loves his stuff, my breast surgeon is a healer and I am switching radiation oncologist because she is just to far away. 

 My first chemo was yesterday and it was very happily uneventful.  I am suppose to hit the wall tomorrow, because I am coming off some of the drugs they initially gave me. I'm an ambian person for sleep but I would use anything that works.

Sleep well ladies  Kristi

Debbie1218

Hi Jill and Kristi,

I have to go back and see my surgeon Monday- am building up fluid that needs aspiration- he's out of the office all this week. Anyway- I'm planning to discuss with him also. Besides my not feeling comfortable with all this, my husband does- part of the problem. My ER was 90% - have a copy of the report- so it's nice to see in writing since the surgeon told me I was ER-. he didn't have the report in front of him. Also- I had initially asked for a second opinion on the path for my lymph node (first surgery). It was never done as there was to have been a gene study done for free out of California, much more comprehensive.Now it seems no one knows where it is. Well, I have it on tape that it was done, so will also be discussing that with my surgeon, like where is it? CALL PATHOLOGY IF YOU HAVE TO TO GET IT. And, what is all this about the breach of the outside case of the lymph node. Asked the nurse- and she said she had never seen that on a pathology report before. AAAggghhhhh!!!!!!!!! 

Regarding the tumor board, it was the initial lymph node removal that was discussed, not after my mastectomy. Had to let him know about that. I know that I have a bit of time regarding the radiation oncologist since it won't be done until after the chemo anyway, and I'll see what my surgeon says about it all. But will make my own decision- after all- it's me, not my surgeon or my husband, bless his heart.

Slept really bad Monday night, even after Ambien (a whole one for the first time). Just felt down all day today- and my sister fixed dinner for us, and she agrees with me and you both, find another doc. Am seeing the Medical Onc Monday and am hoping that goes better.

Someone next week better give me some Xanax, I also see my PCP.

Just feel like all is in limbo- and like I should have seen the med onc this week and started chemo- after all the first surgery was 9/11. But, they look at the time from mastectomy- and should have first chemo within 4 weeks, which would be next week, so hoping I'll have consultation Monday, and scheduled first does also next week. (How long ago was your consultation Kristi?)

I live in Springfield, Missouri.

Hoping this all makes sense. Today, my computer wireless croaked, blackberry has a continuous hourglass, and found out private disability insurance thru work was approved, but have no details.

Kristi- hope you don't "hit the wall" too badly. Let me know how you feel. (Are you working?)

Thank-you ladies, I'll keep you posted. You are a Godsend!!!

Debbie

jill323

Hi again Ladies -

Nice to hear from you as usual. 

Debbie - Wow... you seem to have run the gamut on this.  In regard to pathology stuff though, the only way I ever got satisfaction in getting things on my pathology confirmed was to call the darn pathologist himself.  (Number and name right at the bottom of the report).   Kind of funny, but I don't think those guys like talking to patients - which is why they became pathologists (although I am sure that is an unfair stereotype).   So, they will do almost anything to make it such you don't call them back, at least that is the way mine behaved, even though I was very polite with him.  He ended up being very helpful and nice.  But, that was the only way I ever got any answers on that front.

As for your oncologist and husband- I don't know what it is, but you are the fourth woman I have talked to whose husband liked the doc. when the patient did not.   Same with me - my hubby liked the high brow doc when I did not, but he supported me in what ever decision I made (he has been a saint).  You know, in looking back on it, I think he liked her because he was not as educated on this stuff as I was.  I knew that she was treating via "protocol" while my husband did not.  So, I think the gap in education played a factor there.

And even your electronics conked out on you.  Damn...   When my BB gets the hourglass thing, I have to take out the battery and reset it.  I am sure you tried it, but nothing ventured.....  My DB at work for the surgery was great.   Same as my real paycheck and very efficient.  I have not used it since going back after surgery.  I hope yours is as smooth... you are due for something good ! 

Ah.. speaking of that...ER 90% eh ?   This is EXCELLENT news (well as breast cancer news goes). This means that those AI's should be really effective for you.  Wonderful !   That will be a nice weapon in your arsenal.

Kristi - Yep... I hit the wall second day too after all the lovely drugs wear off (especially the steroid).   Also, if your regimen is like mine, you have to take a steriod the night before, right ?  If so, who can sleep with those things ?   And I have to "wake up" in the middle of the night to take the next round.  They make me real hyper.     Just remember... let others take care of you for once (really hard for us independent types).    And remember this is TEMPORARY.  Get on here to yell and vent if need to.   We will be here. 

As for me.. I go in for round 2 today (sigh)...  Can't tell if I am resigned or a little depressed today.  My hair is almost gone now (and I really hated that shedding phase, found it very embarrassing).  Even though I prepared myself for that, I think it still affected me more than I thought it would.   If I had to do it over, think I would have gotten it cut earlier.  I was holding out hope that some of it would stay (as the NP told me that I may not "lose it all" - leave it to me to have over achieving hair).     I will leave here in about an hour to get my buzz on (remember all the alcohol they give with Taxol), and then sleep it off this afternoon.  Dreading the Neulasta shot tomorrow and the wearing off of the steroid.  But, we do what we must.   (End game, end game, end game).

Take care ladies and keep the faith.  Glad to be going throught this with you.

Jill

Mocity

Good luck today Jill.  I will be thinking about you and sending positive thoughts your way.  I go in tomorrow for my 2nd one (weekly).  I am getting a trim this week since my hair is kind of long and then will wait for the shedding to begin.  I think it has but also just going nuts with all this.  I am not sleeping at all.

You are right... let's keep our eyes on the END GAME!  We too will haev this behind us and be stronger because of it.

I am glad to be going through this with you too.  Take care, Cristl

paras

dear KMA

I am curious what you are doing to protect yourself form future breast cancers since your twin is now being treated for breast cancer and has the gene. i hope yu are being screened with an mri yearly.

Debbie1218

Hello Ladies,

Sending positive thought to you Jill. I still have the hair thing before me, and I know I won't take that very well. Not sure whether I'll cut it before or not.

Had a call from the Radiation Onc doc today. He made the pathologist take out all of the slides, samples, etc. There were areas on the large lymph node that were bulging, so he said they cannot be sure there was no breach - and he recommends radiation therapy. Big points to him for knowing who I was, remembering what we discussed during our appointment, and making the same pathologist relook at everything. He even knew my name- ha. Will follow his recommendation, since that is my gut feeling.

Email today said the blackberry server at work was having problems. And they couldn't tell us that before??? Duh...

Am still letting it all sink in. Talked to my manager today. He is as much of a saint as my husband.

Once all this is done, I'll take my husband out for a special dinner just to let him know how great he has been thru all of this. I'd take my manager out too if he wasn't on the west coast. May have to contact his wife, and send gift card and have her take him out the same night.

Take care, and my prayers go out to you all.

Debbie

kristifromsandiego

Hello Ladies,

 Things in San Diego are pretty good.  Done with first chemo. I actually like th steroids, they make me feel like super woman, if just for a day.  My family however told me to sit down and be quite because I was buzzing around the house talking a mile a minute.  I am taking that pill (Decatron - three times, 1 the day before, one the day of and one the day after chemo) and then the Emend for three days starting chemo day.  I was anticipating being all nauseous, but it has not been bad, I of course do not know what tomorrow will bring.  I do not know what the different things they are giving me do.  Because they are mixing so many things together I don't know fi I were to have a reaction which drug it would be from.

 I had surgery on October 7th and started chemo on November 10th, so a bit more that a month, but my oncologist says just so it starts before 6 weeks all should be good.  My incision is still open and it will take longer to heal, because they are killing all my cells but they felt that it was necessary to start anyway, it will just take longer to heal.  Kind of a drag.

Debbie my oncologist has been my real drug source, he should give you the good sleeping drugs.  You need to bond with him because he will control what happens inside your body for the chemo duration.

Questions,  My oncologist put me on iron today, 325 mg.?   Also, I have been told to worry about constipation, I can't believe I am actually even talking about this.  Anybody have any solutions for this other than drinking 6 - 8 glasses of liquid?

I of course quit my job 2 weeks before I got diagnosed, so I am not use to being home alone...opps got a go, my daughter needs to use my computer, she is 16 and is absolutely wonderful!  Talk soon. 

 Kristi

jill323

Hi Debbie, Cristl and Kristi -

Thanks for the kind words and thoughts.   They tried to make the treatment a little faster today, which it really wasn't.  But, the result was that I think I felt the drunken effects faster.  Even the benadryl seemed to affect me quicker.   I went in for my doctor appt. this morning at 9:45 (she said everything seems to be going very well), and walked out of the office at about 4:00 this afternoon.  That wasn't total treatment time as they finally got me hooked up a little after 11.   But, with all the logistics, pre-meds and the like, it was a long day.  

Bone aches have already started.  Looks like a night for phenergan and vicoden.   But, generally doing well.   The weird thing is that I am hyper (darn steroid) and tired at the same time.  What a strange feeling.   But, food is going down OK and so far my stomach is under control.   Great meds they give us for that. 

As for hair... obviously your call, but I hope you can learn from my mistake on this.  I naively thought given what the NP told me about "thinning' meant I might not lose it all, (and I still might not) which is why I played it conservatively.  However, I have to admit this shedding in making me CRAZY.  There is hair everywhere and it is kind of embarrasing at work when hair starts to rain.  I am thinning, but thinning extremely.  If I had to do it over, (knowing what I know now) I would have gotten it buzzed (rather than cut is short) right when I noticed it start to come out.  At least it would have saved me this aggravation.   For me, I itched for about a week and then my scalp started getting sore (about 10 day mark).  In a couple days I started shedding lightly, and then it started coming out in bigger "sheds".  I can literally reach up and pull hunks out without it hurting. 

Cristl - Did your doc precribe you anything to help you sleep?  You also don't need that aggravation, particularly as a full time working gal.   How is working going for you ?

Debbie - Congrats on getting your oncologist situation worked out.  Maybe he sensed your aggravation with him.   These guys do have egos.  And smart knowing what you were looking for.  Also liked your idea about rewarding your husband and manager.  What a great idea to contact the wife in regard to your manager.  It really does make a huge difference when your managers are supportive. 

Kristi - Your post came in just as I was getting ready to submit.  I used to work in pharmaceuticals and in the GI category in particular.   So, I know a thing or two about this.  First, Iron can be very constipating, so you are right to be concerned about this.   What I am going to tell you might surprise you.  But, I have found a drug as simple as Metamcucil to be a wonder drug when dealing with this kind of situation.  The reason it is very good in this situation is that all it contains is a VERY soluble fiber (one of the best in the world).   This adds gelatinous bulk to your system and moves through very "naturally" (i.e. nothing artificial to stimulate the bowel, which is the last thing you need to be doing on chemo drugs).   Think of it kind of like a big broom working inside that is keeping everything in working order.  (I know, kinda gross).  This is the kind of drug you can take every day just like you do the iron.   I take the Metamucil capsules because I do not like slugging down the powder in the liquid.  But, just make sure you take enough water with the capsules (you will need to take six for a full dose).   The powder has an advantage because you get the liquid automatically.   It will take about 2-3 days before you see a difference and give yourself a week time to get used to the (ahem) short term effects because any time you add any fiber to your diet, you may get a little gassy at first, but this is something your body gets used to and it goes away.    If it works for you the same way it does for me, you won't be able to live without it after a while.  AND it has been a God send during this chemo thing.  I truly believe it helped keep the vascillating diarrhea/constipation thing under control.   Oh.. and remember to take it in a time frame such that you don't take it within 2 hours of any of your meds.  The reason why is that there is very small chance the meds can get caught up in the gel matrix of the fiber.  There is no proof of this, but just to make sure.  I hope this helps.

Kristi  - Let also let us know if you hit that wall.  I know what you mean by the superwoman things, but it sounds like you are doing great !

Jill

Debbie1218

Hi-

Just a couple of things-

First I feel like an idiot complaing about tech stuff not working when you Jill are going through something so traumatic as having your hair fall out by the handfulls. Sorry for not being more supportive of you, when you have been so awesome for me.

Second, does it depend on what meds you are on as to how long the chemo appts take? See- here I am bugging again. Don't answer until you are feeling better, ok?

Cristl, I hope you can get some sleep. One way or another. For some reason, after being up for about 3 hours early early this morning, I fell back to sleep at 5, and my husband woke me up at 2 pm. That is definitely the first time in my life I have ever slept that long. Unreal.

Has any one's medical oncologists recommended trying to stay away from children (unless they are your own) ? My daughter wants to come for Thanksgiving, and her husband, a pharmacist, is not wanting to come as he is afraid the kids (2, 4, 7and 9 yrs) will infect me with something. I'll of course ask during my visit Monday, but was wondering if anyone else has been told anything regarding this?

Sending special prayers to you all...

Debbie

jill323

Debbie -

Hi.  Not to worry.  I was on my steroid buzz last night anyway.  I still feel supported by you guys!

Have to admit, though, hitting the wall quicker this time.  Slept until 10, which is unheard of for me.  Real fatigued and dreading the damn Neulasta shot this afternoon.  

As for your question - ABSOLUTELY it matters what drugs they give you that affect your treatment time.  Another lady on this board was in my treatment center yesterday (very cool meeting someone in person that you meet here) and she got two drugs (A/C) in less than half the time it took to give me my one drug (Taxol - never mind the Herceptin).   I knew going in that when you get big doses of Taxol, I would be there a long time.  By protocol, taxol is one they give slow due to potential allergic side effects that can be very severe.    That said, the AMOUNT they give also matters.  To this point, it should not take Cristl as long for her weekly dose of Taxol as it does for my dose every three weeks.  Make sense ?

As for kids - yes, my onc also recommended staying away from kids due to the potential infection potential.   I forgot one day at work (I now work in Baby Care, but still in the same company that I worked in pharmaceuticals in - you could probably figure out what the company is), and went up to check on a study we were running.   Found myself surrounded by about 20 toddlers - was patting them on the head and the like and then remembered...oops!  Not supposed to be around little kids.  Duh!    That said, it seems a shame not to be with your Daughter and grand kids on Thanksgiving.   To this end, there are some things you can do like have bottles of Purell and the like strategically placed - little kids love using that stuff.  But, you better talk to your onc. anyway.

Well.. feeling a little shaky now.   Think I will go back to bed.

Jill

Anonymous

I just want to tell you that I've enjoyed reading your friendly and supportive posts to each other.  I'm certain that it will help you all get through treatment ... and beyond. 

Hugs,

Doreen  

kristifromsandiego

Hi Ladies,

This seems to be my only place where I can find a bit of solace.  I have so many dear friends that care about me but I still feel very lonely at times and it is a blessing to me to know that you are all out there, even though I am so sorry that we have met through these circumstances.  I hit the wall last night (chemo was on Monday).  I thought I was just sailing through this with out any problem. I am one big emotional wreck today, cranky, tired, mad, sad, ticked off.   I hope this gets better.  I hate feeling so self absorbed. 

I actually like the hyper feeling the drugs they gave me before chemo, they kept me up at night but at least I was feeling well.  Thank you so much for your thoughts on the constipation things, I would like to ignore it but I know that it will come and get me later. Drinking water or juice is so hard for me but I will try. I am just so tired.

I am going to the doctor today, I don't know why, just to check on everything, nearly 5 weeks post surgery, I guess, what is she going to tell me, Oh just another 5 more chemo's to go.  Better go, I will post when I am in a better mood later.  Thank you so much for listening.  Kristi

jill323

Kristi -

Hey Gal !  Vent away.  I have often marveled about how a shared experience (even one we did not want) can bring people together - even from far away.   I too have taken solace that all of you are out there.

As for the wall.... well, it gets us all.  So, we understand.  Wish I had seen your post prior to you seeing your doc.  You should mention your "mental" state to her.  It is as important to take care of your mental health as well as your physical.  In the meantime, if your treatment was anything like mine, you will start to feel yourself turn a corner in a couple of days.  So.. go ahead and be "self absorbed" until then.   It is the only way to get to that corner. 

As for me, I took that Neulasta shot this afternoon.  Hate that thing.  My arm is killing me.  I am trying the Aleve/Claritin regimen recommended by some ladies on another thread.  Will let you know if it helps any.   Also real chilled today and feeling pretty cranky myself.   Very short tempered with my son this afternoon.  Grrrr.....

Jill

P.S. Doreen - Thanks for the kind words.  I think this is a special group that seems to have found its way to this thread - which is why I keep coming back.   Special group of ladies here. 

kristifromsandiego

Jill,

 Thank you for all your thoughts.  I also was worried about how I was mentally handling this thing. I am such a strong woman, what in the world was happening to me.  After seeing the doctor, I think I feel a little better.  I know that I will need to be better prepared mentally and physically than this time.  I am not a pill popper so taking all this stuff is so terrible for me.  It feels like I am being dishonest to my body.  I have always been so healthy so this is just so weired that I am poisoning it.  Thank you so much for listening.  Kristi

Mocity

Hi All,

I had my second chemo yesterday.  It went smoother than the first and I didn't have any reaction to the Taxol.  They did take this only slowly again since I had the reaction the first time.  I started at 10am and left around 2:30.  Then I went over and had my second "fill" into my expanders.  The no sleep is what is killing me.  I slept for 2 hours last night and that was it.  I even stayed awake through 10mg of ambien! Now I am at work trying to get stuff done.  I finally felt back to myself yesterday and it all came back again.  I am grouchy too but probably from lack of sleep.  The ladies at the infusion area are so nice and I LOVE my nurse practitioner.  I can't imagine being somewhere else.  Well, they told me to expect "shedding" next week (which I think it is starting) and then clumps the following week just in time for thanksgiving.  I have my beautiful wig from my hairdresser waiting.  When it happens he said he will stay after hours, buzz it and put my wig on.

Glad to have you all to share this with.  Love, Cristl

jill323

Hello again.

Kristi - A recurring theme I am seeing all over this board is that going through this type of treatment is particularly difficult for strong, independent women.  We are not used to, nor do we like "being taken care of".  We are usually the "care takers", aren't we ?  I am struggling with the same thing.   Also hear you on the pill popping thing.  Before all of this, all I took was a vitamin and of course, the Metamucil.     Now, I practically have a pharmacy in my bedroom.   While I don't like this any more than you do, I have to admit when I start feeling this way, I go back and look at Starr's earlier note on this thread.  It got me to focus back on what was important.  Taking care of me has to be the first priority now because I can't take care of those important to me if I don't.  (Quite a conundrum isn't it?).   I find it odd, though, we have not heard from Starr.   I hope she is doing OK.    And I hope you are doing better today too!!

Cristl - I am sorry you are still dealing with the sleep thing.  I am starting to get really worried about you on that front.  Awake through 10 mg of Ambien ?!!  What is happening when you try to sleep?  Do you just toss and turn, do you feel buzzed, does your brain not shut up (which is usually my problem)?  On the other hand, I am happy to hear that the treatments are going relatively well for you.  Good thing they took it slow given your last reaction.   And by the way, you have every right to be "grouchy".  I am amazed you are at work !

As for me, I seem to have really hit a wall this time.  Hands and feet are numb (and oddly, my tongue too).   Kind of dizzy and shaky.  Very fatigued/lethargic and no appetite.  It is a chore to eat.   But, thankfully no stomach problems as of yet and the bone aches are not quite as bad as last time.  Maybe that Aleve/Claritin thing is working.    Hair is pretty much gone now - which - believe it or not, I am grateful for.  Better than the shedding. 

Take care ladies.  We'll get through this.

Jill

Debbie1218

Good evening everyone-

Cristl, I too am worried about your lack of sleep. Not good mentally, or physically. I hope you're not having to drive. Is there someone driving you around? It sounds like you need something else- maybe something just to break the cycle of sleeplessness. Instead of the newer sleep meds, maybe time ti investigate the use of an older one- you'll have a hangover, but at least you'll sleep.

Jill, I would expect I'll be in your position with my hair in 2 weeks or so. My hair is fairly long, so I'm thinking I'll just pin it up during the initial shedding phase.  Seems if I cut it, I won't see it as easily when it falls in my food...ugh.... I know you are dealing with a lot more than that right now. And if there was something I could do- I surely would. All I can do is hope you feel better tomorrow- at least a bit, and send positive thoughts to you- that this too will have it's end point.

And Kristi - I guess I'm better off- as I have fibromyalgia, and am used to taking medication. My motto with pain and discomfort- live better chemically. I had been taking pain meds and muscle relaxers for many years, and then was prescribed Lyrica. I literally stopped taking the pain meds overnight. It was the first time in years I literally had no pain. Not even when I woke up in the morning if I was able to sleep. And 3 months later - here I am, getting ready to step into all sorts of medical wonder drugs (at least I pray that they are), after being able to drop my consumption down to the bare minimums. Go figure.

I pretty much threw a minor tantrum today- well- major for me since I rarely get angry. I too have always been independant, the one the family called if something was wrong, or broken. After I was diagnosed, all I heard was this can't happen to you, you have the happy family, you're always the strong one for all of us. Then, there was a stupid sprinkler head broken. Usually I would fix it. Of course my husband could do it, but I enjoy doing it, taught my daughter how to fix everything, as well as taught my son how to cook. But my right arm still hurts, I have fluid building up, I'm tired and haven't even started any treatments yet. My husband told me no for the first time in 37 years. Got teary eyed, stomped my foot, and even said a few minor swear words.

I think this is actually starting to sink in. Is it actually possible after 2 surgeries in 6 weeks, a million doctor's appointments and tests to match, and to top it off a stupid cami with a fiberfill "breast" that won't stay put - that after all this I'm just now realizing what is happening? How can this be? I am an intelligent person, and have worked in the medical field for 24 years- you'd never know it from the questions I've asked (right Jill?).  How can my brain be so disengaged? And to top it all off, I have a tender spot along my breastbone, and I swear I feel a lump.

Thank-you all for listening- I hope you all feel better tomorrow.

Debbie

jill323

Debbie -

Thank you for your last post.  I am not meaning to make light of your situation in the slightest, but you did one heck of a job verbalizing how frustrating this whole situation is.   I don't have a clue as to what you look like, but I have this mental image of this woman stomping around her yard taking her frustration out on a sprinkler head.  

In all seriousness, I have met some amazing women on this board, and I count you among them.   I keep coming back to this thread because the women here are smart, funny, strong and dealing with their own vulnerability much in the same way I am.    Nice to have kindred spirits, especially when everything is so uncertain and feels so uncomfortable.   

You know,  I have this refrain going through my head of "what doesn't kill you makes you stronger".  I find it an interesting paradox in this situation to get "stronger" requires the acceptance of vulnerability that feels very uncomfortable.  (OK....before you ask, I am NOT looped out on pain killers).    In other words, this insidious disease has forced me to depend on others in a way I am not used to, which, to my surprise, brought my husband and me closer.  It has also forced a certain reconfiguration of priorities in my world.  Made me get clear on what was important and why.   So... is that what "acceptance" looks like ?   I don't know.   But, after a lot of struggling (and even more to come), I do take a small comfort in realizing I have grown as a person (just wish I could get taller !) - even as unwelcome as that was.

Anyway, I know I think too much.   Thanks for listening to my rambling.   And, by the way, I hope I don't come across as arrogant.   Your questions have been fine and quite appropriate.  I make no judgments whatsoever.  I know this is overwhelming when you get into it.   It is hard to think straight.    I simply want to help where I can because that is one good thing that can come out of this.   I really do care. 

I hope you are doing better today.   When do you go back to your doc ?    Also, a good old fashioned temper tantrum is sometimes just what you need.   Better than keeping it bottled up. 

As for me - not doing so hot today.   The wall really got me this time.  I feel like such a wimp.  Got a horrible pain on the left side of my abdomen.   Also got this continued numbness in the hands and feet.   In a bit of quandary because the sheet from the doc's office says to call if there is tingling/numbness in the extremities but the sheet they gave me on Taxol says this is a common side effect.   But, no fever or any of the really bad SE's.  I will take my blessings where I can get them.

Jill

jill323

OK... Where is everyone ?  You know, if I don't hear from you guys, I will worry (no guilt there). 

Cristl - I heard from you on Friday, but nothing since.  Did you get that sleeping thing checked out ?   How did your second treatment treat you ?

Kristi - I hope you are weathering the storm.   Sounds like you were hitting the wall last we heard from you.   I honestly did not expect to hear from you given where you were.   But, we are here if you need us.    Please take care.  

Debbie - I hope you are doing better today too.  It sounded like you were really frustrated the other day.   

As for me, I am hopeful this is my "turn the corner" day.  I still have a lot of fatigue and the tingling in my hands/feet still making me crazy.    But, last night, my appetite came roaring back, which I take as a good sign.   I had the strangest craving for meat - I think my body was telling me I needed protein.    Bone aches are still there, but not as bad as last time.  Think the Aleve/Claritin regimen worked for me.  

Kind of dreary and cold here in Ohio today.  This is a good day to sit in front of the fire place and watch TV.   This is the kind of day I am jealous of your weather, Kristi !

Hope everyone is doing well.  

Jill

Debbie1218

Hi everyone-

Jill, I hope this is the turn the corner day for you. Why is it that you all feel so bad, and the chemo nurse tells me I won't feel bad at all with the meds they give. I just don't believe her at all. Its like the rad onc telling me I might be a bit tired, but thats all, and for someone with fibromyalgia, the joint/bone pain will be nothing. I just feel so bad for you all, and believe I will be right there with you within a week. I am going to check out a wig to have it ready, and order some scarves, all depending on what the doc says tomorow afternoon.

Am doing better today. I was still cranky yesterday so I made my hubby take me shopping. Walked around for about 45 minutes, bought a few Christmas decorations, then got tired and came home. My sis was trying out a new stuffing recipe and we were the "testers' so went to her house for dinner. Was a short walk to her house, but really cold out. Talked to my son, he says the fires are just horrible. The smoke in the high desert is bad, and the fires just keep starting. Then my daughter called, and told me I better not be out fixing a sprinkler or she would be really mad. Geez......

Moving my arm is so much better, except for the putting my hand behind my head - feels like I'll rip everything apart doing that. But- could I lift suitcase up into the storage area inside the plane? Not a chance....I couldn't even pull a suitcase with this arm... so I continue to do exercises to strengthen both arms...and when I need to go up the stairs to take stuf up, I make 2 trips instead of one. ugh.....

 I see the surgeon again in the morning. Just want him to tell me it's ok to feel like I have swelling under my arm, that the sore spot on my chest is not another lymph node. I'm sure he will say- it's all normal, I'll see you in six months. And think I'm a pain in the backside for taking up his time. But- oh well....

I see the medical onc tomorrow afternoon at 3:30. I was told it's a long appointment- wondering what they do. Must be more than the radiation onc, since barring all of the interruptions could have been done in 20 minutes or less.

Then Friday back to my Primary Care - B12 shot to try and fix the neuropathy on my right foot. I now think it's something else since it's getting worse. Left foot is intermittant, and left fingers are completely better. Right hand is worse, but am wondering if it's the swelling pushing on a nerve, or leftover from lymph node removal since it got worse after the surgery. Then I got a call from PC doc's office asking me to call "regarding my appointment this week". Am worried that he won't want to treat me for anything while I'm under the care of the medical onc. So who know's.... should be a ducky week.

Hope everyone is ok-

Debbie