Starting Chemo in April 2014

EverForward

Five days after round 4 and I'm poking my head out from the bad place to check in. I hope those of you in the bad place with me will see your SEs fade soon. This time I didn't do the Neulasta shot. So I had virtually no bone pain and the muscle ache, while tough, seemed not to last as long. Now I'm entering the funny tummy portion of the program. Taking the day off from work today in anticipation of ongoing fatigue. I feel fine one minute, then need to flop on the couch the next.

Trying to remember that I am a warrior. Just not today.

Footballnut

good morning!

Hubby and I went to Barrie Ontario over the weekend to see races at Barrie speedway. Very cool! There was a cancer car there. I spoke with the driver - he was very cool!! The weather was beautiful - so nice to be outside!

Last week was a great week for me - my SEs seemed to be over and here we are on Monday - time to get my bloodwork and see my onc. I usually do this on tues but since tomorrow is canada day they pushed me back to today

The SEs with my last round of FEC were the worst. Dry mouth, the roof of my mouth felt like sandpaper, food tasted like cardboard and all of my tummy troubles for the first 8-10 days.

I am just dreading starting taxotere this wed. A friend of mine told me that a year later she still has trouble with energy and feels tired!  Others have breezed through it. I think that herceptin will be started as well. I was told by others that herceptin was nothing with no SEs 

I'll be talking with my mo about all of this today then get prepared for returning to the chair this wed at 9. My hubby's cousin will be with me on wed. It will feel strange not having my hubby there. 😒

I hope that I'll be able to continue my exercises!!!  I know that this sounds stupid but I am very concerned about gaining weight. I've been trying to knock off a few pounds in prep for this

I hope that everyone has a great day!!

linda505

Hey everforward - hope your dark place is brightening.  How is your RBC count holding up?  Mine seems to stair step down with every treatment.  My #4 is tomorrow.  So not looking forward to the SE after this round.  SE weren't real bad after 3 but the fatigue is getting really bad.  I just have not energy and the days that I do it is short lived - can function for a few hours then I am just exhausted.

Welcome back Footballnut - sounds like you had a good time!!  I haven't gained any weight on TCH - I weight basically the same as when I started chemo.  The energy thing is my longest lasting SE but I am sure that is caused by the RBC counts which should rebound after chemo is done and I am not sure which is the culprit - the carboplatin or the taxotere or both.  I really don't think you should worry too much about the taxotere and you are only getting it a short time right?  

SharonDe

Checking in to say hi and wish everyone well.  Sounds like a number of us are going through the same stuff again.  Glad you made it to the races, footballnut - looks like fun.

I am on Day 5 after my last treatment.  Yesterday was the worst with aches and pains, but I just kept telling myself it is the chemo working.  And, of course, the fatigue is such a joy.

Even though I am DONE with chemo, not really celebrating til I get past the next couple of weeks.  I'm too tired to cheer

Footballnut

well just when I was starting to relax I've freaked myself out again by reading the internet

I've had a black line running down the nail of my index finger since last fall. It hasn't changed.

I had mentioned it to my family dr last year and she wasn't concerned. I also mentioned it to my onc during my last visit and he wasn't concerned either

This morning I researched dr google and found subungal melanoma. Some of the images that I found look nothing like my nail but done do. It seems strange to me that this line and my lump appeared very close to each other

So now I'm freaking out. I'll mention it to my onc again today. Hopefully he can relax me - again!!!!

jbokland

Been off for several days as I had my wedding! Such a wonderful celebration AND I came away with a major beauty tip!

My white hair was still sparse on the top of my head, the girl who came to do my makeup brought an aerosol can of dry shampoo.  She sprayed it in my hair and it remained as a white powder and filled in my hair!!!  If you have white hair, this will work for you too!  This shows a before and after

Timbuktu

Congratulations!  you look beautiful and so happy!

I just got back from infusion #4.  The dr tried to talk me out of it.  They only give 3, I'm still not sure why, except that chemo does beat up your body and this is my second time around.

The surprise...I tested positive for Lynch Syndrome. The test was not definitive and I need follow up.

Lynch syndrome is a genetic disorder that increases the chance of of many cancers.  It was the dr at Anderson who told me I needed the test, no one else.  Having had both breast and endometrial cancer, it was good advice to get tested.  The worst part...my kids have a 50/50 chance of having it too.

brigadoonbenson

Timbuktu - I learn so much on this website!  Sorry about your positive test.  Worrying about our kids is one of the harder things about this disease.

jbokland - Beautiful and looks like a perfect day weatherwise too.

It was so slow on this site this weekend I checked my internet connection twice.  I am either glad that everyone was out having a good time or sad that everyone was suffering SE's.  Hope it was the first.

 

linda505

Love the pics jbokland!!  I had my last fill with my PS today - one phase done!  I wore my head bling today that I got from jbokland at sassyhead.com.   The girls at the PS's office took pics and wrote down the website.  My PS was fascinated and asked if he could touch it LOL - gotta love him.  Anyway here I am before I went to his office this morning and just got home from going out to dinner and this is all I wore on my head - it was very liberating!!!

mikishelley

Wow ladies the pics on here are beautiful and sassy I really like the Bling!

I haven't visited here for a while. Last week I had my TE's removed and my implants put in. All in all a very uneventful experience. The surgery was nothing like the BMX and TE's. Any way it looks like the group here is progressing well through the chemo. Congrats to those who have finished! The SE's really do take longer to go away with each time. Tomorrow it will be four weeks since my last one and I think things are finally beginning to turn around for me. The fatigue is lingering but the neuropathy is soooo much better. I can walk without a cane and my muscles in my legs ache less each day. 

I do have a question - The MO has me starting Tamoxifen in two weeks. Since I am ER+/PR+ I understand this is the norm. After my surgery I began to read up on Tamoxifen and now I am worried. Gotta love the internet (right Footballnut?) So, apparently the FDA says the risks of developing Endometrial or Uterine cancer is outweighed by the benefit of recurrence by using Tamoxifen and that Tamoxifen is a known Carcinogen. I still have my uterus, and if I take Tamoxifen I am 10 times more likely to develop cancer in my endometrium or uterus. I had a BMX (elective), chemo (elective), zero nodes involved, I was Stage 1b, after my BMX pathologists found DCIS in my right breast tissue. My IDC in my left breast was .8 mm, tumor grade was 3. I am adopted so I have no family history to go off of. My BRCA was negative. So I guess my question for you ladies is - If you were in my shoes would you take the Tamoxifen?  

Oh and today was my last day for medical insurance coverage. I am going to join a Tamoxifen board on here, but we ladies have been through so much together already I really would like opinions from my sisters here!

linda505

Hi mikishelley - that is a tough one - my MO has told me the two most important things that I am or will be doing after the BMX is taking the herceptin for the HER2+ and going on an AI for the ER/PR+ part of my cancers - all preventative.  I will most likely end up on one of the others as I am post menopausal but still have all my parts, but the tamoxifen has an advantage over the other choices in that it helps to build bone strength, where the others will cause the opposite effect.  I haven't talked to my MO on what he will be suggesting I take yet but I have thought about asking him if I could take Tamoxifen for awhile to build the bone and then switch to one of the others.  I know there is a way for premenopausal women to do one of the other drugs and you may find that info in the other threads.   So many hard choices that we have to make!!  Just isn't fair that we have to do such dangerous things to ourselves to treat this horrible disease.

mikishelley

I totally agree Linda. I can't grasp the idea of increasing my chances of getting another type of cancer by ten times just to try to prevent recurrence of my breast cancer that the docs say was caught so early I have nothing to worry about, so why should I take the Tamoxifen? I think the only reason I am classified as high risk is because I am adopted and have no family history. Arghhhhh!

mmtagirl

Mikishelley, did you have the oncotype dx test done?  Knowing your score might help with your decision.  If you have a high score the benefits of tamoxifen may outweigh the risks.  

Curious, what data source did you use to find all that scary stuff about increasing risk 10x of other cancers? I will start tamoxifen this fall after I finish taxol.  Which happens to start tomorrow.

I have to say, I am a bit nervous.  I did pretty well on AC and it seems that those who do well on one struggle with the other.  We shall see!

jbokland

Linda

Love the Sassy Head photo! Warms my heart and glad to know it was an uplifting experience for you.  It's fun isn't it??

Thanks again!!

Jaimieh

anyone else who is on taxol started to lose any fuzz that was growing during AC ??  I seem to have lost about 1/2 the hair that had grown back. .  Not happy about it.  

mikishelley

mmtagirl - Google FDA Tamoxifen carcinogen. The FDA admits that Tamoxifen is a carcinogen but the benefits outweigh the risk of developing the other cancers. My Oncotype was low-mid range. I can't remember off hand maybe 26, but my chemo was not necessary based on my oncotype I elected to have it. Here is where my concern lies. How can I elect to have chemo but need to take Tamoxifen. So confused. 

Tinkerbells

Haven't checked in for a while - want to say big congrats to all of you who have finished! I will be in chemo heck for the long haul thanks to my her2 status and the one positive node.  There is disagreement between myself and my surgeon and MO about rads - the node was intramammary and the axilla clear.  They say no rads and I am concerned.  Of course, there is absolutely no research on this since intramammary nodes are only present in about 4%. Yay me!  I will consult with RO at my center and an outside one.  

Morale-wise, knowing I have 9 more weeks to go is really chipping away at my resolve. The uncertainty about treatment decisions is making it worse.Jamieh - my stubble is about the same 3 treatments in, but the eyelashes have thinned out soooo much. I hate that more than losing the hair on my head.

We all have long roads ahead of us - wishing all of us the very best outcomes. We deserve it.

Longislandl8y

Cold, I'm right there with ya getting #5 of 6 today.  First I have a followup appointment with my surgeon.  Seriously, while undergoing chemo I haven't given much thought to my incision scars at all.  As you all know, it's difficult to take the focus off the chemo.

Nana, that's awesome that you got royal treatment here in NY.  New Yorkers sometimes get a bad rap but they're really just in a hurry all the time, not rude like some will have you believe.  Today you have a hot one here for sure so stay hydrated!

Sharon, I'm excited for you! Yippee!!!

Hope everyone is feeling well today! Will check back after my infusion. xo

mmtagirl

Taxol #1 is done!  Count down to September 16 for #12.  So far so good.  The Benadryl knocked me out for a nap and I am sure the decadron will kick in and keep me up all night.  

Mscaruso, I can relate to the morale issues knowing how many treatments are ahead.  I was/am fatigued thinking about every week infusions and how they cut into my summer that will never be.  But, on the flip side, these treatments will hopefully allow us to have many more.  We will get through this!

Hugs to us all!  Watching the World Cup.  Go USA!

clarrn

Feeling a bit blue here too.  Not sure why,  just need a great date out with hubby maybe!  And a bit sad that I can't walk to the normal Canada Day celebrations or fireworks  Any 

linda505

Treatment #4 in the books - two more to go.  MO reduced my taxotere since my liver enzymes are still going up.  I told him that if they continue to rise after this reduction that we may call it quits after this one - he says he agrees to an extent as he feels that the most important things I can do is the surgery, which I have done, and the herceptin.  He also is skipping the neulasta shot this go around as my WBC's got very high with the last one and really didn't ever come down to normal so he isn't sure I need it - he said if I start to go low that he will give me a few neupogen shots.  Here I am at tx 4 - wishing you all lots of SE free days!!

Footballnut

Here I sit freaking. I've had a black line down the nail of my index finger for 6+ months before I was diagnosed. My family dr and onc have told me that it's nothing. Well yesterday I searched dr google and found subungal melanoma. It's a type of skin cancer that is a rare form of skin cancer - less than 1% of people diagnosed with melanoma get this and it is mostly found in dark skinned people and is most common on the thumb or big toe

So when I met with my onc yesterday I told him that I was surfing dr google and right away he said that it's not subungal melanoma. He doesn't think that it's anything to worry about but because I told him that I was freaking out he sent a picture of my nail to a dermatologist. Can't wait for that appt

Now that I have come to terms with the bc I'm panicked about this. In my heart I am of the opinion that it's nothing but I'm back to the "what if". A good friend of mine died of a rare form of skin cancer last year

Stressed all over again!!

Tomorrow at 9 am back in the chair for round 4 - first round of taxotere

MakeLemonade

just hopping in ...

Glad to read all of the positive things going on.  Am thinking of those of you with negatives and sending positive thoughts and wishes. 

Taxol #2 today ... Unfortunately had a bit of a reaction in the first 15 minutes. Hot flushes, trouble breathing, chest felt like it was in a vise.  Nurses literally jumped into action ... As soon as I said I wasn't feeling right, 3 of them were there in an instant.  Drew the curtain around the chair, stopped the Taxol, had blood pressure going, grabbed another drug .. Not sure what it is even though they told me twice :-)  

I am allergic to Benadryl so can't have that.  They also gave me more of the other anti histamine they are giving me in my IV.  I also thought I was going to throw up, so was given a basin, but ended up not needing it.  Was then given Ativan to calm me down and it also helps with nausea.  

Was back to normal withing 10-15 minutes but am going to admit, I found that to be scarey!  

Taxol was restarted with no effects.  Ativan knocked me out, so I slept through it :-). 

Next treatment will be given the other drug up front. Need to find out what it is ... Starts with a Z or X

Herceptin finished the day.  I had driven myself to the the treatment, but called hubby to pick me up as still felt foggy in my head. Will get my car when he drives me back for the Neulasta shot tomorrow.  

Blood work was mostly good.  Hemoglobin starting its descent again, but still 9.5.  Platelets are now the concern.  Got the treatment today even though they were quite low, but if they keep dropping might have to postpone next treatment.  ARGGHH, just want this DONE!  Supposed to be finished on July 29!  

Came home and went straight to bed and slept so soundly.  Didn't have a clue what time of day it was or even WHICH day it was when hubby woke me up for dinner!  Still feel that way a bit - had been enjoying a much clearer head on the Taxol up until today .... This evening my head feels as fuzzy as it did on the Adriamycin

Here is hoping for minimal side effects for everyone.  We WILL get through this even though it doesn't feel like it will ever end sometimes! :-)

brigadoonbenson

MakeLemonade- How scary!  Sounds like the nurses are prepared for this contingency and know exactly how to handle it but you must have felt very vulnerable. 

Perhaps the fatigue was from the Ativan and not the Taxol.

clarrn

The chemo brain continues!  So just as I am crawling into bed I realize that I didn't fill my prescription for my Dexamethasone pre meds!  I am supposed to take 10mgs 12 and 6 hours prior to chemo.   Already 3 hours late for the first dose and now sitting in emergency by the sick people because this is the only place to get it at this hour.   Grr.... And on the holiday so ER is busy with traumas.  How could I be so forgetful?  And such a mismanagement of health care dollars!  I can't believe I did this!!!

brigadoonbenson

Clarn - We come first now.  Having to sit in the ER is bad enough.  Don't beat yourself up and good luck in the chair.

mmtagirl

Footballnut, I know it is hard,but, take a deep breathe and try to keep comfort in your onc believing it is not melanoma.  I am glad he scheduled the appointment for you to be sure.  Sign of a good one!

Make lemonade, I had taxol #1 yesterday.  Sorry to hear your second treatment was so scary.  I would have freaked a bit, too!  I came home and slept from the Benadryl.  Tossed all night, though, with the residual decadron.  Work should be fun today, ughhhh.  Waiting to see if my taste buds will change like Taxotere.  I didn't have the problem on adriamycin.  Stomach kind of weird but no nausea 

Clarrn, don't beat yourself up.  So easy to be forgetful living the life we have right now.  I found it interesting, again, hoe different doctors are.  I didn't take the steroid for AC until the day of treatment in my IV and then 3 days following.  Only did it for the Taxotere I had for one round.

Anyone getting neupogen with taxol?  I will be getting that shot with each weekly treatment since my WBC and ANC don't seem to be bouncing back.  Was still very low yesterday after my last AC three weeks ago.

Hope you Canadian girls had a great canada day!

EverForward

As if chemo wasn't bad enough, this other crap on top of it is just so unfair. Hugs to those if you dealing with so much. I'm picturing a time in the future when all of us are finished with chemo and we've gathered together at a fancy hotel somewhere for a big group hug.

Football, I hope it turns out to be nothing.

Swiss, I haven't seen you lately. How are you holding up?

Swissmiss

Posting from the chair this morning Everything is going well, but I pray SE's are mild this time around. The 4th of July and my 18th wedding anniversary coincide with my usual "dark place," so crossing my fingers!

I've read all your posts, ladies, and I'm praying for all of you. I'm especially happy for those finishing up chemo...but admit I'm a teensy weensy bit jealous too  I have one more chemo after today!

Everforward...thank you so much for thinking of me. Like I've said before...I always feel the love here

What I am truly grateful for today: moisture wicking pj's and the ceiling fan (on top speed sounding like a propeller!) above my bed.  These night (and day) sweats are taking over!  Last night was worse because of the pre-chemo steroids, but every night I am literally soaking wet. Yuck!  Besides the muscle/bones aches, this is the most severe SE I've had since starting Taxol. Heading to Walmart later to get more moisture wicking tops, as they are awesome...chemo brain has made it impossible to remember who recommended these, but I sincerely thank you

I'm getting sleepy...closing for now. Thanks to all for all the support. I'm so much stronger with you girls!

xoxo

SharonDe

Just saying good morning.  There is so much going on, it's not possible for my befuddled brain to reach out to individuals, but know I'm thinking of you all.

Still crazy fatigued one week after tx.  Hoping to get some energy soon!