Starting chemo January 2009?

Add me to the list of delayed tx.  Weird how this is happening to us all as we get close to the end. My dr. came in to see me  today and said can not give tx as long as I have any active infection so don't know when we will be able to do it. Bumming me out!!!  I must say the thought of tx on Thurs. feeling like I do was not much more appealling than delaying it.

Patti

Hi everyone,

I've been busy with work this month so haven't had a chance to visit the boards in a while. Right now I'm lying on a bed in the oncology unit receiving Herceptin. When it's done soon they'll give me the Doecetaxol (Taxotere). Am nervous about side effects from both drugs, but one thing I've learnt from reading these posts is everyone is different so I'll just have to wait and see how I react.

They told me it'd be a long day today since they have to keep me for a few hours to make sure I don't react to the Hereptin so that's why I brought my laptop. What I'd really like to do is sleep but the extra steroids I'm on make that impossible unfortunately. I was still awake in the wee hours this morning...

Thinking of you all.

Hey all.  I have spent the day around my hospital today.  I wanted to get my blood drawn in advance of tomorrows infusion. 

LadyJane- I am sorry for your delay.  I hope you are healthy enough to move forward very soon. 

 KM47 - I hope your infustion was restfully boring and that SE's are non existant or at least minimal. 

BerklkeyKim - The walk sounds wonderful. I envy you the beach and warm weather.  Spring weather of 50 degrees or warmer keeps teasing us in Boston and than going into hiding. 

I noticed two signs on the wall, one for a free one day class for patients and caregivers in accupressure and massage that I signed up for and another for a free class in pilattes for breast cancer patients.  It starts in May and I am going to be doing round 6 than so I am hoping I will have the energy and that I can get myself up early enough to get to the clas by 9am.  I am also signed up for a gentle strenthing class that starts in April.  Keeping busy seems to help me keep up my energy but I also can't over do it. I ran into one of my bc support group members and she will be around tomorrow and said she would come visit me in infusion and I ran in the art therapist who will be around the unit from 11-1 tomorrow and promised to stop by and set me up with a project.  I plan to wear my pink wig tomorrow so I should be easy to find.  Fun things like this don't lift my spirts as much as they did but I think they are still worth the effort. If people around me smile and laugh and can approach me I will feel happier.

I found out today that I am approved for LTD.  The first payment will be minimal since I was getting vacation and sick time but I should get full coverage starting next month. That was good news.

Last night DH woke up and could not sleep. I found him watching TV around 3am.  I stayed and watched the end of the program with him and then we both went to work.  I am worried about his sleep patterns. He has been waking like this for a long time and the stress of lack of sleep is effecting him.  We have been staying up till watching tv since I started a ritual of having tv and cookies while watching Frazier and Sex in the City.  The last episode of the series is tonight so maybe we can go to bed after Frazier now. I really like that we have this ritual but I don't like our sleep patterns.  Up till midnight everynight and sleeping till 10 or later on weekends which blow the day.  

I was reading a magazine I found at the hospital called Caring4Cancer.  There was an intersting article about Melissa Etheridge who did a tv concert that did not hide her bald head when she was going through bc treatment.  She talked about being true to yourself and not to the fear.  " I can be afraid of what I look like. I can be afraid of making people feel uncomfortable.  I can be afraid of being exactly who I am, which is a [canser] survivor who just finished treatment. Or I can choose love over fear."  She talked about how she spent three weeks in bed where she did not even have the strenth to be read too. All she could do was think.  She ran through her life story 3 times.  Then finally there was nothing coming anymore. Her mind was still.  She had nothing to worry about, nothing to do, so she just stopped thinking and found this incredible peace.  This is the same thing I have been reading about over and over in various books.  The inner peace that is there if you can just stop thinking.  She also said "This is the time to make your life about you.  Canser is an opportunity to completely change anything in your life you wish were different.  What if you could have those three wishes from the genie lamp?  Think of canser that way. All those thoughts that are in the back of your head, move them to the front. They need to be heard. Those are the thoughts that are guiding you toward creating happiness.  And that is our purpose in life: to create happiness."  

 There was another article about the journey thought canser, based on the book by the same name.  There are, according to this article, by a onc who also saw a family member through cancer, seven levels of healing.  Different steps on the road to healing from canser

1) Education and Information- basic knowledge and inforamtion about canser and treatment

2) Connection with others- importance of finding support and connections with others

3) The body as Garden- regarding the body as a precious and wonderously complex garden rather than just a machine

4) Emotional Healing-explores the transformative power of releasing fear, pain, and anger.

5) The nature of mInd- how our entire experience of life is profoundly influenced by our thoughts, beliefs and the meaning we give to events

6) Life Assessment- explores aspirations, goals, and purposes of our lives

7) The nature of spirit - embraces the nonphysical dimensions of our being that exist beyond time and space, and even beyond illness and health.

 I am not sure I follow the whole theory but I thought some of you might find it interesting.

There were also good articles on Managing Side Effects, Getting Your Financial Bearings, Will Working Work for You, Managing Cancer with other Chronic Conditions, Sexuality & Cancer, Whatever moves you (exercise) and several other interesting topics.  It is a free magazine.  If your doctor or center does not have it you can suggest they get copies for free by visiting Caring4Cancer.com.

I think that is it for now. 

Welp, I'm happy to report that I got through treatment #4 today without an allergic reaction to Taxotere (after having one on #2 and #3).  Adjusted premeds, extra steroids and slowing the drip seemed to do the trick.  I am so relieved I can't tell you... just to get through the day was a huge accomplishment.. it was a very stressful day.  The onc told me before it started that if I had any problem with Taxotere again we would definitely stop at 4.  If I didn't, she would agree to do 2 more rounds.   They have #5 scheduled ... I'm not sure I'm going to do it... but it's scheduled.  Just taking it one day at a time... 

KT57 - I WANT THAT MUG...!!  Where can I get one? LOL

HoltBolt:   Been thinking about you all day ...  So happy to hear this one went well...what a relief!  I took the mug to work --- covered a few letters with pink ribbon stickers - ya just never know who finds what offensive these days.   My boss laughed at it...that was a good thing. 

Renrel:  thanks for all your writing -- I find it very helpful in this journey.  You have an awesome array of services.   Hope all goes well with round four tomorrow.

Am gearing up to start the steroids tomorrow for round 5 on Thursday. Been feeling really good  since Sunday.  Not as many days of feeling good this time, but am grateful for these past several days.  Feels like I have re-gained the physical and emotional strength to get through another round.

Hang in there everybody!   We will all get throught this!

walking three miles!!!! The thought wears me out.  I am still getting out of breath walking the 5 feet to the bathroom. Have seen some improvement, but as the drs. promised it is going slow.  Day five in the hospital.  I think I am getting better because I am starting to think about getting out of here.  I have resigned myself to the fact that I am probably not going to be able to do much for a while after leaving here, but it would be nice to be home.  Really starting to worry about DH who has everything on his plate now. He is a saint and does not complain. Seems to be handling it all but I worry he is going to collaspe one day.

I have never been seriously sick in my entire life and I think this bout with double pneumonia is worse than any SE I've had from the canser txments.  Not being able to breath really really sucks.  I have a renewed sympathy for asthmatics..which two of my four children are.  I had no real idea what they were going through during an attack until now.

Missing a lot of work now.  DH really wants me to take the rest of the school year off.  I'm  thinking about it.  I may be forced to anyway as the dr. tells me it will take a long time (weeks) before I  recover and school is getting near the end of the year.

Holtbolt - So glad to hear you got through #4 without reaction.  I had  bad SEs after first taxotere. Have not really even had chance to discuss them with my dr. as I got sick almost immediately after 1st treatment. What kind of allegeric reaction did you have?  I am not sure at this point if mine was an allegeric reaction or just SEs.  I do know I am bummed that my second tx. is on hold, but at the same time I am scared to death of having it.

 I hope all of you who have finished up will continue to post and let us know how you are doing and that yes...there really is health after tx.

Good day to all.

Patti

ALO123--whoohooo!!!  Off to your last!  That's gotta feel good. 

Holtbolt-How many tx of taxotere have you had?  I finished one and at day six, I still ache.  I finally am able to move around a bit,albeit just a little and then I feel so fatigued! From what I can tell, the reactions also seem to happen differently for everyone.  some say the second tx, some say the first....I will make sure the nurses put the drip in slowly this next time and I have plenty of benadryl, steroids and/or whatever.  I took vicodin for the pain, but ended up with a huge stomach ache and so stopped them...I forgot about the l glutamine for the neuropathy?  for the pain? 

LadyJane-I am thinking about you and hoping for a soon to be trip home.  So sorry you have to be in the hospital for so long. 

km47-- Hi old Fec buddy!  Isn't it great to have the nasty taste out of your mouth?  Did your nails turn into black streaks?  My thumbs did and so did my big toes.....I am going for the hard as nails polish to protect them.  My oncologist suggested bag balm for the dry cracked effect as we go along  .  so far my nails are just streaked from the FEC. 

I have no hair yet---some people have mentioned their hair grows in a bit when taxotere starts. 

Kt57--How's the weather in Wisconsin?  In Michigan we are fairly cold in the morning, but have been warming up to the high 40s and 50s for a bit.  Spring is on its way!!! 

Thinking of all of you.  Jess

I'm done and it feels so good.  Of course I'll have to make it through the weekend.  I hope the adrenalin pulls me through with little side effects.  At least I know the dark moments  I felt in the past about having to go again, should be gone.  I just got a call from the PS and my exchange surgery will be May 21. 

I am very happy today.....I can't wait for all of the January jewels to be in the same boat....than we can talk about how our hair is growing in!

Jess- only high 30s today -- nasty wind. Felt my wig lift a little in the wind on the way into the grocery store - wouldn't that have been an amuzing sight!-- just have to laugh.  Don't think you can predict entirely what each cycle of chemo will bring - each has been different for me.  My third was the easiest.  We'll see what tomorow's #5 brings...

Alo123 --- congrats on being done ---- can't wait to be you!

ddlatt---  sorry to hear about the reaction....really stinks.   They'll figure out how to pre-medicate so it doesn;t happen again.   Think you and I will start radiation about the same tine (if I'm able to stay on schedule)

LadyJane - hope your pneumonia is resolving and you get home soon.   Take care of yourself.  Your DH can handle what he needs to....work will be there, your focus needs to be you now --- 

Renrel: when I finished 4, and I was doodling in meetings at work, I would make 6 of every doodle and cross out 4 -- a visual that more are behind than ahead.  hope this one goes well for you,  wishing I had a pink wig for tomorrow !!   

HoltBolt : hope you are doing well and your FLS days are mild, or better yet, absent!.

KM47 -  am on day one of steroid mania --- know exactly what you are saying.  Ativan helps a bit.

Well wish me luck tomorrow.  Plan to put my hands on ice, plug in the IPod and listen to some healing meditation.  

Thought you guys might be interested in this piece a friend of mine wrote a couple of years ago. He has lymphoma but has quite an interesting - positive - take on life since being diagnosed.  I certainly could relate to a lot of it:

http://publicaddress.net/3510#post

KM47 - my birth mother and grandmother both had breast cancer and died when it spread to the bone, so i am definitely having the BRCA blood test. if it's positive, i'll have a hysterectomy. i've already had a double mastectomy. in the U.S. it's offered, but it's very rare that insurance companies pay for it, and sometimes people are hesitant to have the test and have it on their records because they don't want their insurance companies to know about the results. but in order to get the hysterectomy, you have to have the positive result on the record in order to get the insurance company to pay for the hysterectomy. the BRCA test costs about $3,000, so many women just can't afford it. as usual, the U.S. "health" system has all its priorities messed up and is a big joke. 

Plutz, my sympathies, hope you feel better soon and the fear fades.

Well it is Thursday and my treatment is not going to happen.  I have very mixed emotions about it. Part of me is very upset at the delay but the other part of me knows there is no way I would tolerate treatment very well today in my present state of health.  I am starting to feel better and the walk to the bathroom is not quite as hard as it use to be.  They tried to take me off oxgen yesterday for  awhile  but my levels dropped too much and had to go back on it.  My fever is finally gone ( 2 days now) so that it good news.  Day 6 of this hospital stay and I think I am really going to miss the hospital bed and its easy up and down when I leave lol.  Won't miss the food much.  Although the longer I stay here the better it gets...

JESS:   I did not have painful toes but could not walk for a few days due to painful feet.  The soles felt like they were on fire.   Did not have red streaks on skin but did get a  rash on legs, arms and hands that was pretty bad.  Have pictures but not sure how to post them.  I'll ask my DH later to see if he knows how.  The rash was pretty nasty looking.  Should have yours looked at.  They gave me steriod cream to apply to mine.

About the gene test - the very first dr. I saw after surgery who was the radiologist talked to me about that test and said it may be something I would want to think about as there is history of bc in the family.  Haven't thought much about it since then. I am not sure I want to know, but I do have two daughters so I may need to do it.  If I have it does it mean they will?  I really haven't read up on it much.  Perhaps I will while I sit here waiting to get better.

My "baby" turns 13 on the 29th and I am hoping I am out of the hospital by then.  Say some prayers for me.  I do not want to miss his birthday.

Good luck to all having treatment this week.  Hope all goes well.  Patti

I started to post and it got lost. errrr.  Here are a few shout outs, I am tired so forgive me if I miss any.

LadyJane - So glad to here the fever is gone. I feel certain that you will soon be off the oxygen and out of the hospital.  6 days is a long time and hospitals are designed to treat illness not for us to heal.  You will feel stronger once you are home and allowed to sleep through the night and have you own pillows and blanket and all that is meaningful to you near by.

Pluztz - Dang!  I hate to hear about another Jewel in the hospital.  Glad you are out and can really start to heal now.

KM47 - Great article.  Thanks for sharing.  Glad you enjoy my posts.  I did have the breast cancer gene test - I forget which one but it is specific to the cancer Jewish woman are prone to.  It was unlikely that I had it since family history is not very strong, - Maternal Great aunt had full blown cancer with a masectomy but I don't know the details and my Maternal Aunt - same blood line, had in situit (sure I spelled that wrong).  Then me.  But I wanted to know because it would put me at risk for ovarian canser. I came back clean.

Jrgoloom-  The only toe pain I have is in the nail beds.  But I do have some soreness, on and off on the soles of my feet, mostly the balls.  My onc said is is likely at bit of nueopathy. Some feel pain some feel numb.  He recommended taking vit b-6, which I have been but not regularly.

KT57 - Thanks for the doodling trick. I am thinking of this as being finished with the required doses and going for the bonus ones since I have done so well.  Go get yourself a Pink wig girl. I can't tell you what fun it was.  Only cost me $20 (after I balked at spending more money on yet another head covering and the salesman knew I was bald from canser.  Otherwise it would have been $28.)

OK I think I covered everyone who was not just responding to someone else. If not I apologize. I did not omit you intentionally.  Blame it on Chemo brain and fatigue on day 2.

I talked to my doctor yesterday about genetic testing for the CYP62d6 enzyme in relation to using Tamoxifen.  He said it is very controversal because they are not sure that being a poor metabolizer makes a diffference in how well the tamoxifen works.  He said he would think about it until we meet again and suggested I read up.  He gave me an article that can be found at this site

http://breast-cancer-research.com/contents/9/2/103

I haven't read it yet but he said it is a good place to start.  He also told me that if I don't do Tamoxifen then I need to take something to supress my ovaries. Which was what I was also told I would have to do if I skipped chemo.  Of course then I was speaking to a lady in the infusion center yesterday who when though A/C several years ago and she told me that she got uterine cysts and than cancer from the tamoafin.  She did not even have symtoms for the cancer but she insisted on a sonogram and they found it.  Anyway she said her doctors made it sound like it was very rare but the nurses said it happens all the time. So more stuff to look into.

I also have been looking at my remaining hair, thin and prickly though it may be and thinking, if those hairs are hanging on what about any possible canser calls. So I asked him about why they tell us that no SE are not a sign the chemo is not working. I believed him but wanted the reasons behind it. He explained that different cells have different sensativity to the drugs.  Canser cells are very senstive, hair folicals and guts cell are less sensative and vary in sensativity and skin cells are even less sensative.  Health cell can also repair themselves.  Canser cells because of their gentic breakdown can not. 

I was also told that a glass or two of grapefruit juice or a table spoon or two of apple cider vinigar are OK.

I have had a bump on my scalp for ages that I have ignored, other then when I try to wear a bike helmet and it hurts, since Iam prone to cysts.  Since I am less inclined to ignore lumbs now and my scalp is pretty much bare anyway I had him take a look.  He says it is a cyst and I don't have to do anything about it.  But I will talk to my PS about cutting it out when I get my implants. It would be nice not to have pain when I wear a helmet.

I think that covers what I learned yesterday. Hope some of it is of use to some of you.

I have a nuelasta shot in a half hour.  I am in the canser resoure room of my hospital.  I am starting to learn to knit through their knitting hour but the writing therapy workshop was canseled so I have been blogging away on here instead.

Hope everyone is feeling healing energy entering their bodies today and bringing them closer to the end of this part of our journey. 

Renrel

Sorry to Phyllis and Ladyjane!!!  I hope you feel better soon.

I did have the BRCA test...I am BRCA1 positive.  WHich is why I removed both breast and the ovaries.  I did not do the full hystrectomy. Mostly scared of the OC....  My insurance took care of the entire cost.

I hope everyone else is doing well this week....time to rest over the weekend.