Starting chemo January 2009?

Misty--Still thinking of you and your son, and hoping that he is doing better.

Renrel-Thanks for the food info. My nutritionist also said I could (should) eat natural soy 2-3 servings/week. This surprised me since I'm ER+ I do eat flax seed.

Ddlatt-glad to hear #2 was easier. Sunday is usually the day I feel the worse after Taxol every Friday.My onc said he'll cut my premed benadryl and steroid, but now I'm nervous about allergic reaction, so I might just call him to say forget it. HAIR!! Great news! How long is it? When my brother's grew back after chemo it was grey and curly, but now 2 years later it's back to brown and straight.

Had a nice day yesterday in Golden Gate Park. Took my dh who's home on spring break to Golden Gate Park on a glorious day with every one else in the Bay Area doing the same it seemed. Was so fun to go to the Japanese Garden and the remodeled CA academy of sciences--like we did when the  kids were little. Today we need to drive her back to Stanford--not far and I'm going to make myself go even though I'm so tired and sore on Sun.

Hi everyone, sorrry I have disappeared for a while................I am done with chemo!!!!!!!! Thursday last taxol and Friday last neulastra shot!!!!!!

Misty, You and you family are in my thoughts, reading over I have forgotten how many of you have young children!!! I just don't know how I could deal with that.

  It is funny because I put a note up on the front door of my school saying about my last chemo.........but forgot that it is still in me for two more weeks, I have schuduled my port out on April 13, I cannot wait, one thing that happened my oc said because I have only 3 out of 25 nodes that I did not have to do radiacition but she would like me to talk to him, the radioligist wants me to do 10 weeks.......I said NO, then my oco not is sorta saying there are studies,blah blah blah..................so do I go with her first advise or her last advise.

              I am so done, that I have decided NOT to do radiation, it may be a gamble but I am not sure. Has anyone else had this problem.

            Since I have had no side effects except emotion............and I am not doing recon, I am pretty much done. I hope to stay a little connected to all of you......you all were a life line and this forum is a fantastic thing.............to bad we couldn't all meant up someday!!!!!

      Wishes you all no more temperature, S/E, and may all of our hair grow back fast!!!!!   Pamela 

HI everyone,

Misty, my thoughts are with you and your son and I hope you will receive good news soon. I can't imagine how hard a time it must be for you right now. I had been feeling a bit sorry for myself today but reading what you are going through put things into perspective for me.

I'm at day six after treatment and have not felt quite so good with the taxotere as I did with the FEC. I had the treatment last Tuesday and was okay until Friday when I started to get achy, particularly in my back. I've taken pain medication but I'm not sure that it's done much. It's not severe pain but enough to make me feel lousy.  I was surprised it took until three days after the taxotere to get the aches and wonder if they started once the steroids got out of my system (I stopped takikng those on Wed night). I am hoping they might go soon - I'm trying to tell myself I'm better today but I'm not sure. How long does it last for other people??? I don't have neulasta like some of you, so mine must be due to the taxotere...or potentially the Herceptin which I had for the first time as well -- I really hope it's not the Herceptin because I don't know if I could handle feeling like this every three weeks for the whole year of Herceptin treatment. I have two more Taxoteres to go so I guess I can handle two more bouts of feeling like this.Hopefully I might be able to get something more effective for the pain.

Jess, no red streaks for me- but very red cheeks (the inflammatory response the doctors warned about I guess). My cheeks are back to normal now but from Thursday through to about Saturday they were really red. My tongue also got a bit sore on Friday but that's gone again now.

It's interesting to read about the cost of the BRCA test in the US - here in New Zealand it is covered under the public health system so you don't have to worry about having health insurance to get it. Now I've decided to have it, I just want to get it over with. Unfortunately the genetic counsellors only come to the city I live in every three months so am waiting for an appointment the next time they come. There has been a lot of cancer in my family, but only once incidence of breast cancer that I know of so am hoping that means I, and my female relatives, do not carry the gene...(although obviously I realise it doesn't guarantee anything).
Jess my surgeon said that if I did not have the gene he would not recommend having the other breast off. However, it's a different story if it I do. I understand what you mean about the sitting duck thing. I just feel too sore and tired right now to think clearly about it. I haven't really discussed with the doctors in detail about having my ovaries removed but if I carry the gene I guess that might be the case. I'm not sure if that would then mean I would avoid the whole five-year Tamoxifen treatment then.
Sometimes it's all a bit much really...

KM47 the taxotere bad SE hit me about day 4-5.  So sorry its hitting you too.

Misty, still thinking about you and Malcolm, keep us updated 

Hi all---

JillyG--I had the same problem at the beginning of tx.  The doc had me go on provera for about 5 days till the flow slowed down and eventually stopped.  He said chemo throws you into a horrible flux of changes.  It eventually stopped and has not been much of anything for about two months.  I didn't like taking provera because I am er/pr +, but he said it is okay for just a short spurt to get my body to stop.  It was quite a relief when it did.

ddlatt--You mentinoed earlier you had itchy hands. What did you use to mitigate the effects?  I had a whealy rash on my hands.  They are quite red now, but wow the itching is enough to drive you made.  I must have scratched thru the night and now I have a couple of scratches on top of the rash.  Sigh---Thirty two more days!!!

Berkeley Kim--I am so glad you got to spend some time in Marin and San Francisco.  I loved living in both San Francisco and in San Anselmo .  My favorite hiking place was Point Reyes-quite beautiful.

KM47---I am 10 days out and feel almost normal-except for the rashy hands.  Oh and my runny nose.  I have been eating nonstop though.  I ate almost one huge package of whoppers-malted milk balls covered in chocolate.  It seems to be my only pleasure!!!

Anybody having trouble walking up and down stairs? 

jrgolomb - the only thing that helps immediately with the itching is to put my hands under running (very hot) water for at least a minute. i've tried benedryl gel and spray, and that works off and on, but the hot water is what really works for me. 

Thanks guys for the advice. It sounds awful but it's comforting to know I'm not alone! Not that I would wish this on anyone, but just knowing I'm not going mad and that this is normal somehow helps.

I haven't had any rashes yet but last night my nails started feeling really sensitive. Today I noticed white blotchy patches on the nails so I guess this is the start of the nail reaction. I will have to trim them - I tend to type with my nails and it's getting a bit sore to do that!

Am hoping, that at day six, I am over the worst of this aching. From what you all have said I'm anticipating I'll be on my way to feeling a little more normal by the end of this week. 

I know what you mean about the runny nose -- someone told me it's due to losing nose hair. Since I started the taxotere it's been quite bloody as well. It's not a bleeding nose as such but when I blow it's bloody rather than clear. Might be related to the platelet stuff you guys were talkng about?

I too have been eating like a horse. I was blaming the steroids but I've stopped those now so not sure what my excuse is....haven't felt up to exercising this past week so will be the size of a small house soon if my eating habits don't change!

Thanks again to all who posted about your experiences. It's good hearing about how you have managed to adjust things to make it easier on subsequent treatments. I'm hoping my oncologist might be able to give me something to help get through the next two a bit better but I guess it hasn't been horrendously bad so I shouldn't complain.

I'm finally feeling "human" again after my 4th treatment. Sat. was day 10 and I did much better --then yesterday I really felt good. This morning--even better!

One odd thing is that my heels are very sore and red. They actually feel burned. It is similar to the feeling my mouth has after treatment. Very strange. I put Gold Bond cream on them last night but they don't seem much better this morning. Anyone experience anything similiar or have a suggestion about what to do for it?

I'm going out of town for work this week and don't need feet problems!

I finished three of FEC and now am ten days away from Taxotere # 2 of 3.......No cytotaxan in this batch.

Jess, it may be the taxotere, only took one cycle for it to hit me

Misty, hope Malcolm is doing better today

Ladyjane....I'm glad to hear you are home from the hospital....hang in there and try not to be so hard on yourself.

Misty....I'm hoping both you and Malolm are doing well.

I hope everyone else is hanging in there....

Ladyjane: I agree with the others, don't even for a minute give yourself a hard time for working.  I don't remember what chemo regimen you had.  My onc said that they all expected TC to be easier on people then AC but are finding out its not the case and TC is harder to get people through then they expected.  Can't answer for you, but feel your pain regarding the decision to make in quiting chemo or not.  The way my onc explained it when they had me quit due to toxicity was they couldn't tell me exactly how much benefit I would be giving up (ie. is it all or none and if you don't get all of the treatments its like you got nothing, or is each treatment worth about 2.5% and all you're giving up is a less then 3% benefit, or will they find out in the future 3 of TC is enough and you don't need 4 like AC--they don't know) by not getting the last round but that they felt I'd reached maximum toxicity and therefore had to believe I'd gotten as much benefit as I could from the drugs.  Your doc may be using chemosensitive as another way of saying the same thing, I don't know.

I can tell you that many weeks later I'm still very weak and SOB and have trouble getting up and down stairs, and still have reduced kidney function,  and they tell me to expect many more weeks of recovery, which tells me that another round of chemo may have done me in as badly as they were afraid it would.  In the middle of the night I worry about recurrence and will always worry about what if that last round, or doing a few taxol to top things off would have made the difference--should I have pushed for it.  

You know we all gear each other up and encourage each other to push through no matter what, that I felt like a failure for having to quit.  Then, I realized that was as ridiculous as women I know that felt like they failed for taking meds during labor, or needing a C-section, and not having "natural child birth".  This isn't a torture contest, its about doing what's going to keep us healthiest.  My onc told me many oncologists have the same problem, they feel like they've failed us if they don't get us through the whole treatment plan, and it can be just as hard for them to step back and say enough is enough.

I can't tell you the right thing to do, I can tell you I understand how hard a decision it is to make.  Right now I feel deep down that what my body needed at that point was to heal and recover and I'm happy my Onc stopped, and she told me she has learned to trust that instinct in her patients.  So, my only advice is to give yourself some time right now to recuperate and enjoy being at home, don't let those middle of the night fears run away with your logic and instincts, and then trust that you and your Onc will make the best decision for you.  Best wishes

Thank you all for your comments and support.  I have had 4 treatments of A/C and 1 treatment of taxotere.  Seems as if a lot of you are having as much trouble with taxol so I am not sure if switching to taxol is the answer.  Just wish there was some way of knowing if I have done enough or not.  Of course none of us will know that for a long time.  I just don't want to quit and then have reoccurence and question if I should have.  Of course as my DH pointed out I could finish treatment and still get reoccurence and then I will be angry I pushed myself to finish....

 Kmmd - Thanks for your reply.  I had remembered one of the january jewels had been told to stop chemo after a trip to the ICU but could not remember who it was.  Sorry to hear your are still not feeling all that great.  I had not realized a part of me was feeling like a failure because I may quit chemo before finishing the treatment plan.  Thanks for the comparison to meds during childbirth and C section, it helped me put the feeling of failure in prospective.

I am feeling stronger today.  I have a 50 feet cord on my oxygen tank so I can go almost anywhere in my house and have been able to go up and down the stairs a few times today. I am  trying hard to not over do as I can easily do that.  Sitting and doing nothing except watching tv or reading drives me crazy.  

Misty:  Still thinking of you and Malcolm.  Hope things are improving for you both.  You are in my daily prayers.

Patti

ladyjane, I hear you.  The day I saw the reruns for NCIS come through the 2nd time and realized I could tell you what happened in each episode and in what order they were going to show them I knew I had been watching a lot of TV.  I've gone through books from friends, Amazon, the library....   Finally feeling well enough to do some work from home so that is helping.  I so hope you feel better today,, don't push it, you've been through so much I really feel for you.

 Year of the Hat, hope you stay home and take care of yourself today.