February 2011 chemo pals

Hi dragonfly!

Glad to hear from you.  Sorry to hear about the Big D - I am also afflicted but seems to be more hit and miss.  Good days and bad days, the problem being I don't know in the morning which it is going to be!  I had two doctor appts yesterday and I have never left the house that soon after a tx so I was praying for no Big D.  I dodged that bullet at least, but today - not so much.

I am bummed about being allergic to the unknown!  I am very tempted to skip the steroids and not tell....I know, that would be naughty.  The other possibility the PA raised was a photosensitive response.  I am guilty of going out in the sun a little on Saturday - watering plants, etc.  I didn't lay out or anything but I did get sun on my arms and shoulders.  I already had the rash but I may have made it worse.  I really don't want to switch at this point - Taxotere is the devil, but its my devil!

Sorry about the hot flashes - I can relate.  Surgical menopause at 45 with almost overnight hot flashes.  I took HRT for 10 years and now have a strongly ER+ tumor - do you think I am beating myself up?  You bet.  All I can say is dress in light layers, hydrate, lightweight layers on your bed, don't tuck your blankets in at the bottom, a fan, and lightweight p.j.'s.  They even have some wicking fabric pajamas you can get on the internet although I have not tried them. Even on HRT (I took only enough to keep the flashes under control) I would have a few a day.  Off HRT I had them at least one every half-hour.  I couldn't function, couldn't sleep, I was a mess.  I quit HRT the day I was diagnosed and have been shocked that the flashing has not been worse.  On top of that the majority of the year in Florida is hot and sticky, a bonus!  Just thinking about July and August is already making me cranky!  At least I will have replaced my TE by then.

Glad your weather is warming up - I spent 4 winters  in upstate NY.  I rememeber how exciting Spring was!  I am so excited I got my underhair thing by UPS today.  I put it on (nice and cool and soft on top of my head) and put on a hat.  OMG!!!  It looks like me again, before BC!  I just stared at myself for a minute!  Unbelievable!

jenn - I would try the B6, LGlutamine and L Acetyl Carnitine anyway, and start taking it now if it is ok with your onc. I think it is good for prevention and treatment.  From what I have read from the people who got neuropathy on Taxotere (I think you can get it on any chemo) it did improve with time for the most part.  For some it is permanent, and for some it is severe.  I makes some sense that the further you go into treatment the more likely you are to have issues with it because of the cumulative toxicity.

I know what you mean about the unknown.  There is some possibility that I will have to switch for #5 & 6 if they think I am allergic.  Will know after #4.  As far as SE's watch for headache, digestive upset, and I imagine the same stuff as you did before.  For most the nausea is not a problem and you are used to dealing with how to prevent that.  Those of us on Taxotere still take anti-nausea meds.

Emily - hopefully in the next couple of days you will feel quite normal.  It happened for dragonfly, LisaGH and myself on days 7-8.  You will wake up and be amazed that you could feel like crap on a stick, and then all of a sudden like nothing happened!  At least that is what I am hoping for you!

Definitely figure out what works for you and then do it right off the bat.  On tx #1 I messed around too long with anti-nausea drugs that didn't work and ended up dry-heaving.  That is too late to get ahead of it!  If your pain requires narcotics, then go straight for that.  For myself - I just basically write off that first week post-tx.  I know it will be yucky until a week goes by.  I feel so good for the following two weeks it makes it easier knowing I will have a bad week coming.

I really appreciate every ones notes on their Taxol/Taxotere experiences. It is very helpfull to know what I signed up for (good and bad). Emily I'm sending  extra positive vibes your way. I hope you feel better today.

I'm sorry some of you are in the chemo/bc rut. It keeps happening to me also after every treatment. I am thankful that I have physical evidence that is for sure working. Try and remember that it is, and we are killing this nasty creature. We are going to come out of this changed for the better, stronger and healthier, I'm sure of it.

Special k I just want to thank you for putting so much info in your posts. It is very helpfull and always appreciated.

Best Wishes to those on both ends of the cycle this week. 

I can relate to everyone feeling anxious about treatments. have my fourth and last EC (same as AC..) next Thursday and feeling anxious and sick to my stomach at the thought. I am aware of a risk of heart problems from this medication, which haunts me. I am sure everyone gets anxious before chemo and it's a question of weighing risks of harm from side effects versus the cancer risk.  It has to be a personal decision. 

mamaoftwo - will you be done after next week, or do you have to move on to another chemo after that?

michelle - I just went and read that article.  It is interesting, especially to me.  I had a complete hysterectomy (uterus and ovaries) 10 years ago at 45.  I went on estradiol (estrogen only) HRT immediately because surgical menopause made the hot flashes  intense and unforgiving, like chemopause does.  I had mammograms with ultrasound yearly starting at age 40 because of fibrocystic issues.  As a result of those mammos and US I had numerous needle aspiration of those cysts - never had a problem.  In September had my annual mammo & US and found my 2cm, 96% ER+ tumor.  I stopped HRT the day I was diagnosed.  I think the problem with whether estrogen is good or bad depends on so many variables it is hard to make a generalized statement about it!  What are women supposed to do?  Are the docs that are prescribing HRT taking all of the potential factors into consideration, and how can they?

I'm seeing the gyn office tomorrow to discuss whether a complete hyst. will be of benefit for me.  I've had cyctic ovaries forever, irregular periods, pain, uterine polyps, etc.  My onc says that from his standpoint, there is no benefit.  But from a gynocological standpoint, it may benefit me.  We'll see, I guess.  SPECIALK, the immediate menopause was roung on you, I take it.  It makes me nervous...

Did I mention to you guys that my onc referred me to a complementary medicine doctor?  I asked him about supplements and the like.  He confessed that he really didn't know and referred me to someone who does.    I love that.

I go next Friday and I'll let you know what she has to say about various supplements to take and why.  I know that many here are already knowledgeable in this area, but I can't be the only one who is a bit confused about it.

It's one doctor's appt. that I'm excited about!

Now tha one tomorrow to discuss complete hysterectomy and mysterious blue nipple discharge?  Not so much.  But it will be nice to, once and for all, rule out that I am an alien. 

SpecialK - Thanks for all the info!

Pejkug3 - I had TCH#3 today too, so we are on the exact same schedule?  Do you get the neulasta shot tomorrow?  It would be interesting to compare notes in terms of what SE's you have and when.  I hope you have a good three weeks with minimal discomfort!!!

Alison

I also had my ovaries out early at age 43, two years ago, so went into immediate menopause, but didn't have any major hot flashes or mood swings, and didn't use HRT.  

pekjug- let us know what you found out. I just learned that my treatment center (Sloan Kettering) has a complementary medicine expert (they use the term 'integrative medicine").  I am thinking of making an appointment too.  Even though chemo already started, it's never too late.

Not sure I really need to update you all, but I visited my doc yesterday to tell him I was back on board with the chemo continuing, after my luxurious week off, his nurse advised him beforehand as I expected.  He took my hands and held them for a while, I decided he was so glad I was back with the program, becuz I did the same thing to him a week ago and held his hands when I FINALLY got to talk to him about how I was going around the bend with AC #3. 

Well, blood counts all good, even tho my fingernails got really white for a while, ate a lot of protein in interim, and so got in my #4 out 4 AC treatments yesterday, Thurs my usual day for these things.  Back today for a shot.  I've been putting off bills and groc... might ask husband to do it. 

On the cold treatments, which was in other forums about dry ice caps for the head to keep hair, well, when I started my AC stuff, after each chemo and for a few days, I put really cold water on my front scalp part when rinsing my face (too cold on whole head), and a few of those hairs are what stayed, makes me agree at least freezing up ye old fingers and nails after Taxol starts in two weeks might indeed help.  Question:  I think the Taxol is when the weight falls off?  Anybody know?  I've lost 15 lbs so far, would like to lose 40.  Smile.  One good reason to do chemo.  All good wishes, magic wands, and sunny green grass for everyone in our group.  Love, GG

Special K...Day 8 for me and not quite feeling normal but way better than I was feeling. And yes, lesson has been learned...go for the big gun painkillers right away!

Alison..Chemo nurse wasn't sure if leg pain was from Taxotere or Neulasta or both. The first 3 shots of Neulasta I had didn't cause any pain at all and Claritin was never suggested. Maybe the Decadron was supposed to be in place of that?

sukie..Thanks...feeling a bit better today..

Hope everyone else recovering from chemo this week are suffering minimal SE's!

Getting ready for my 3rd chemo on Monday - ECT.  I am having pain around the tumor and in my underarm which I have discussed with the doctor. When I felt the pain today, I felt under my arm (which I have avoided because it makes me so nervous) and can still feel the swollen lymph node under my arm but it is definitely movable and kind of rubbery/squishy.  He said it was inflammation from the "clean up" of the dying tumor - I should have recorded the conversation so I could play it back while I'm freaking out thinking it is actually caused by something ominous.  I have had a really anxious week.

Walking helps with the anxiety - I have started a lower fat diet, cut out almost all refined sugar, and am walking 5-6 days a week except for the first week following chemo.  I'm working all of the weeks and weekends except for that first "chemo week."

My bone pain from the neulasta was much less after the second cycle than the first.  I also felt better in general - I think I was dehydrated going into my first cycle - this time I made sure to drink LOTS of water for at least two days before and it seemed to help a great deal. 

christina and sukie - even though Ihad had BMX and complete node dissection on the cancer side after chemo I have edema and tightness all around the breast and arm.  It seems to last for the first couple of weeks after each tx, and then gradually subsides - so don't feel like the lone ranger!  Christina I love your reference of recording the conversation with the doc so you could play it back to yourself during freakouts - that made me laugh.

What specific diet changes have you made or what are you avoiding?  I am triple positive, so different problem, but need to aggressively change what I had been doing.  I ate relatively well, lots of fruit and vegs, etc. and walking, but I am curious about your specifics.