Taxotere is a nightmare

Omaz

Hi tracie - That sounds like a busy day!!  Best wishes for a speedy recovery.

Linda-n3

You are all right about the nails being worse AFTER chemo!

Butterflygarden, I took L-glutamine three times a day starting just before chemo #2.  I used the powder, got a HUGE container at The Vitamin Shop.  Put 10 gm in a small glass of water; it mostly dissolves, is a little grainy, has no flavor to speak of, easy to get down.  Don't know if it helped or not, but it DID help me get an extra glass of water down 3 times a day!   There is also some thinking that alpha-lipoic acid (ALA) is helpful, and I am currently getting this by adding ground flax seed to my oatmeal or yogurt every day instead of purchasing it as a nutritional supplement.  I did a lot of research on this BEFORE I started taxotere, told my MO and PCP this was one of 3 things that I most feared, and they did not offer much advice on prevention - they just said I could try whatever I wanted to except vitamin E they were not wanting me to do.  My MO also said I should be sure to get vitamin B6, but NOT in large doses as that is also toxic to nerves.  Good luck to you!  About 50-60% of patients get SOME neuropathy, but only about 5% get severe or persistent problems.  So those of us who are on this discussion thread talking about our experience is theoretically a minority.

I do have a question for everyone who HAS had persistent problems: Did your MO file a report with the FDA about an adverse drug reaction?  I am going to ask mine to do so, and if she won't, I will.  I am just not sure the post-marketing numbers reflect what the pre-marketing clinical studies showed.

I am feeling like an angry bitter woman this week, my PCP told me I may NEVER get back to my old normal self with energy and neuropathy.  She refuses to refer me to palliative care for symptom management.  My anger may be the only thing that is giving me energy these days.

I had several "moments of grace" today however.  We have bluebirds nesting in one of our bird houses, my flower pots are really looking great, and this past week we had a QUADRUPLE FULL rainbow after a storm.  Tai chi and aqua arthirits classes are helping both mood and physically.  I have talked with family and friends today, and they are so supportive and loving. 

joyce1419

This is to eveyone on this thread,  I have been following three threads but this one very helpful .  I have had every side effect and thought I would get through much much better.  I love and admire all of you for posting.  I just cannot do it.  But following you has been such a support I could not do without.  Though, when at my worst, I could not even look.  No one knows how this is except those who have been there though many lovely friends and dear children are sympathetic and supportive..  This "cure" of diagnosis, waiting, surgery, chemo is such a long porcess others cannot quite get it.  It is a roller coaster of unpredictability.  Thank you to all who have been sharing.  You have made me feel sane. I love your honesity.   I am on #7 or 8 treatments tomorrow.  Iwas doing dense dosing AC q 2 weeks times 4 then T q 2 weeks times 4, but the Taxol #1 was a nightmare of rash from hell and pain a 10/10 and I am now on Taxotere q 3 weeks to finish this sequence. AC was awful and I was so hoping that T would be  OK.  Thank you, again.  I so needed to follow all of you brave, strong wowen.  Hoping for the best, as always, tomorrow.  My love and best to all of you.

EmilyInOntario

Just an update from someone who has finished taxotere. Day 11 post last dose here for me and even though I am finding it very slow to recover from this last round, I got through it when there were many days I just wanted to quit. I still have leg weakness, some neuropathy in my toes and eating is a real issue still because everything tastes so bad...( I am living on chocolate milk)  but I hope to be able to report that I am much better soon. Hang in there ladies!

nmoss1000

Hi Emily how many rounds did you complete? Thank you for the encouragement I just did # 4 and finding it hard to get to the finish line. Good luck and I hope it turns around for you soon:)

lago

nmoss I hated round 4 too but I did finish all 6.

EmilyInOntario

nmoss....I did 3 rounds of FEC followed by 3 rounds of taxotere. My last dose of taxotere was reduced by 25% because of the neuropathy and leg weakness. I'm glad that the dose was reduced as it has still been the hardest...I think because of the cumulative effect.

nmoss1000

Hi Emily my issue is the none pain from Nuelasta, crippling for 3-4 days solid. I am trying ultram this round but being foggy for that long is also a problem to. But It is better than pain. Your are amazing for enduring all of that. It's just hard to see the otherside of it now. 3-4 are the hardest so far. Hi Lago!!! I keep hearing #4 is the hump round:)

greytcruise

n3ypb, I understand where you are going through.  I knew I could not get through exchange surgery being on Tamoxifen, it was ruining my life.  I let my doctor know that I stopped it, I am so glad I did.  I really believe my symptoms were so bad I would not have made it through surgery on Tamoxifen.  I will try to go back on again in a few weeks, hopefully I will not have the side effects anymore.  The side effects, I think were a combo of Taxol and Tamoxifen.  I am feeling much better.  Let me know how you are doing.

marjie

Emily - I did the FEC (3) and Taxotere (3).  Found the last one seemed to take longer to get over - you're right, it's probably the cumulative affect.  I had to give myself the Neupogen injections and found at first there was severe bone pain, but after that, I was achy but not too bad at all.

I didn't do very well on FEC so they reduced the Taxotere dosage by 10% for the first tx then another 10% for the next one.  Someone asked me which was better....lol....I said "NEITHER!!"

coni111852

hi and welcome to new ladies sorry you have to join this blog... but glad be UAE u will find so much info to help you through the process..

just had my double masectomy the surgery it self was not so bad, just uncomfortable... got pathology report not the what I was hoping for 8/21 positive nodes with largest mat of 3mm the tumour on breast 5mm by 3mm shrunk. alot but I fk d is too many lymph and from what I understand I think I have dcsi and idc?!! have appointment with rad doc im hoping to get more info surgeon didn't say much grrrrrr

lago

Coni you could have both. My tumor was mostly IDC with some DCIS. They only measured the IDC part. Sorry about the nodes but you will have several guns to get the strays… if you have any.

BTW you can ask your BS for a copy of your report. I did. They gave it to me no problem. 

coni111852

yes acutaly I want to go to the states for a second opion, to make sure i dont need anymore chemo, any suggestions where is a good good breast center? im not happy with 8 lymph nodes at all even though it was very small still 3mm...i dont want this to hunt me later on again

joyce1419

coni,  i am not sure what part of canada you are in.  i went for a second opinion at seattle cancer care, which is a combo of u of washington and fred hutchinson.  it was thorough and professional.  i saw all in one day a breast cancer surgeon, bc oncologist, and bc radiologist. they reviewed my slides and mammos too and came up with somewhat different findings.   At my HMO the review of choices seemed prechosen and time spent was too short.

  had to go back to my HMO for tx, but I did follow Seattle Cancer Care recommendations and my HMO was OK with that.  good luck.  joyce

lago

Coni check this list out: http://health.usnews.com/best-hospitals/rankings/cancer

Lots of very good places in the US.  I went to # 43 even though both the 15th and 27th are located in my city. I am very happy with my care.

My oncs (female) area of research is: "Breast cancer treatments, Mechanisms of resistance and sensitivity to targeted therapies for breast cancer" If you are interested let me know and I can send you her contact info.

coni111852

i dont know if is ok with you guys to ask but in Canada We dont pay for health care, is it very expensive for the consultation and for them to review my chart? can you guys give me an approx estimate, I think I also might want to do a petscan too...I will bring all my chart, mri, ct, pathlogy report etc...I just want to make sure there is nothing else i can do...and i can follow here!

thanks guys!

coni111852

Lago pls do that will be great I really dont know where to go or who is good you know, I just really want a second opion...just for peace of mind

thanks

TonLee

A Pet Scan in Ohio, around here, costs roughly $13,000.  A consult can range from $100 to $300...if you tell them you're paying cash they'll usually give you a discount.

coni111852

What $13000 for petscan no wonder Canadian docs keep saying is no good for breast cancer! That's insane! Kk consult not bad!!

coni111852

Thanks Tonlee

coni111852

Wow u should come to Canada I think petscan is 1000-2000$ even with plane tickets still cheaper and get a vacation out of it

At least that what it says when I googled it

mccrimmon324

I was lucky that my insurance covered 80% of my Petscan, I think it would have cost us around 4000.00 if it wasn't covered.  Hubby was going to sell one of our cars to pay for it if they didn't cover it. 

TonLee

Aw McCrimmom, that is so sweet....husbands can really rock can't they?

The $13,000 is what my insurance company was billed when my neighbor got her PET scan....(we have the same Insurance) so they may well have a "rock bottom cash only price." 

Coni, in the US sometimes prices are "elevated" for insurance companies...most places are happy to negotiate with cash only customers

DivineMrsM

The Pittsburgh, PA hospital where  I had my PET scan (this Februrary) billed my insurance company about $10,000 for the test.  I would have to go back and look at the explanation of benefits to see if there was a slightly lower "agreed amount" between the hospital and insurance company.

Linda-n3

I know several of you have peripheral neuropathy, and wondered if anyone has been using a topical analgesic from your doc? My PCP called on Friday and suggested a topical cream that might help, said it does not have the side effects that oral/systemic meds has.  I am thinking about it  (if the co-pay is not too exorbitant), just wondered if anyone else  has tried it. I saw that there was a clinical trial that just ended in Dec. 2010, but results are not released yet.  I think it was amitriptyline/ketamine combination for hands and feet.

tracie23

I have amitriptyline pills , I only took one it made me so tired I couldn't function so I just deal with it but I I have not heard of the creme.

Omaz

Hi tracie - how are you doing these days?

EmilyInOntario

Regardng neuropathy...I am 18 days past my last taxotere dose and the neuropathy has spread from just the bottom of my toes to the entire soles of both feet. My dose had been reduced 25 % on the last round.  Really hope this is temporary.

At this time my leg weakness has not improved and I can take about 20 steps before I have to sit down due to the legs becoming weak and tight and the shortness of breath. This makes going anywhere outside the house pretty difficult...:( I would love to get out shopping! Hope this doesn't last much longer either!

Omaz

Emily - the weakness does get better with time.  About 5 weeks out you may notice real improvement.  the neuropathy is very individual.  I still have mine, it goes in waves, better, worse, better.  I am waiting for the better to stick!!  I am 5 months post.

lago

I'm with Omaz on the 5 weeks stiffness starts to get better. My neuropathy was very slight. Just the heel(s) of my feet. (At least at times I think I might have it in my right foot. Left foot definitely). I find it gets worse when its cold, damp or humid out. Today is extremely humid The heel(s) are numb not really painful.