Taxotere is a nightmare

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. 

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!

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

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:)

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!!"

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. 

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

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!

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.

Thanks Tonlee

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. 

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.

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!

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.