Taxotere, Carboplatin and Herceptin
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moon - it is saying my computer does not have the software to open it and do I want to buy it? These are Word documents I created on the same computer, arrgghhh! I googled the issue and apparently it is linked to a recent faulty update, which will hopefully be corrected shortly.
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See if you can email them to someone who has an older version sometimes that works. LOL dont we just love Word? LOL
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NEUROPATHY question - has anyone had severe neuropathy that has completely resolved? If so, how long did it take?
I am almost 8 wks PFC now and still have SEVERE neuropathy. I have been reading the past couple of pages and it sounds like those with neuropathy had symptoms that then mostly improved before the next treatment. My neuropathy progressed with each chemo - involved feet after chemo 1, involved hands after chemo 2, involved face/mouth after chemo 4, involved arms/legs and trunk after chemo 6 so that now my whole body is involved. It is worse from the waist down but is so severe I have trouble walking (due to severe foot pain and leg weakness). Since finishing chemo my hand and mouth pain (burned as if I ate a jalapeno) have improved although there has been continued progression of numbness in both areas as well.
I am still taking B6, B complex, and L-glutamine. My onc says I need to give it more time but I fear that if it is this bad still that it will be permanent. She has offered me Neurontin but I heard it causes fatigue, weight gain, and makes some people loopey so would prefer to wait it out if it might still improve on its own. Some days I'm convinced I'll be like this permanently - I've been crying way too much over it. I think I ended up overdosing on the Taxotere because I had abnormal liver function during chemo.
Any information would be helpful.
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ChickaD, sorry you had such a rough day at the hospital. Hope all goes well with the transfusion and you feel much better afterwards.
Minus2, Sounds like you did not have the response to chemo that you had hoped for
Hopefully your docs can get their schedules and the OR time coordinated for you asap! ugh.0 -
I too take a lot of supplements. Since right after my diagnosis I have been working with a nutritionist who I find is extremely knowledgeable. I have not told my oncologist who told me not to take anything. He said fish oil made the blood "thin" - my nutritionist said that was incorrect, it made the blood "slippery" and that was a good thing. None of these things, according to her, are contraindicated during chemo or radiation. Who to believe? who knows. But this is what I'm taking:
6000 mg. liposomal vitamin C
milk thistle extract
liposomal resveratrol
Cod liver oil
Life Extension super K
Iodine Prolamine
N-Acetyl cystine
COQ-10
Multi-vitamin
multi-mineral
Solgar Hematinic
B-complex
Biotin
l-glutamine powder
Vitamin D - 2000
VSL#3 - a probiotic
Magnesium
Taurine - these last two were added because I was having heart arrhythmias and eye twitching.
These are the things she has prescribed. When chemo and radiation are done I will add (my own list, not consulted with nutritionist):
AHCC - a mushroom preparation
Ashwagandha
Astragalus
Quercetin
Turmeric
Ellagic Acid
Green tea extract
DIM
Maybe this is crazy, but I want to do everyting I can to get healthy and prevent a recurrence. I have lost 26 pounds since my diagnosis, due mostly to my 8 hour a day eating window followed by 16 hours of fasting every day. I have not been able to exercise. I have had 4 out of 6 rounds of TCH. After 1st treatment I had to wait 4 weeks because of heart palpitations they needed to do some heart tests... after 3rd treatment, my blood counts got very low... hemoglobin was 8.3 and platelets were so low that I had to wait an extra week before 4th treatment, at for the 4th treatment they reduced the taxotere and carboplatin to an 80% dose.
Other than the blood count problems (the anemia has left me with very little energy) and the nausea (which I have been treating with cannabis - the zofran gave me a headache and the compazine didn't really work) i have been doing ok. No mouth sores. No neuropathy, other then the eye twitching. My digestion isn't great, a lot of belching, and some diarrhea - but all in all surviving.
Can't wait until my last 2 chemo treatments are done, and I'll just be on the Herceptin (and probably Arimidix by then) - I'm a little anxious about the radiation, but hopefully will be done with that by the holidays.
Every though I don't post often, I do read :-)
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Looks like I'll need my implant(s) removed w/this new surgery for chest wall recurrence w/lymph mets so doc can also check small growth underneath R implant & so I'll have a flat chest wall for the rads. I know I will want implants again down the road (even if my son doesn't understand). Any advice about what happens or what i should expect? Anyone been there - even if you stayed flat the 2nd time? Will I have to go through TEs again? (ugh) Shall I have them both yanked out even tho R is the main issue now, since L is the one that already needed revision?
Are there any good threads that might be useful? I just posted on 'exchange' and 'recurrence after BMX', but I know some of you have been on these boards for awhile & might be able to give me some hints. Thanks in advance.
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Minus, try the TE trouble board.
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Sorry I've been MIA since Wednesday. I was out of town.
kirklandgal I have some neuropathy in my left heel that never went away but it's really minor. I know my neighbor had it in her hands too but I think hers went away. I was told it could take up to 2 years PFC to go away. Mine did not. It started after my 1st tx but would get better by the next chemo. By chemo 5 & 6 it didn't go away before the next tx. I took Acetyl-L-Carnitine because after my first tx I felt a little bit of pins and needles in my left hand. (Still take it because it's a memory booster too). 8 weeks is a little early so don't give up hope.
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minus - my left TE was out for seven months because I had skin healing issues for three months after BMX. My right remained with its surgical fill, until the left was put back. I would imagine that whether your implants can be replaced will depend on what your pectoral muscle looks like when they are ready to put the implants back, but if they can do a one-step direct to implant on someone who has never had implants it would seem that they might be able just replace yours. It will also depend on what happens to your skin after rads I would think. I am on the TE Trouble thread a lot and there are a few that lost implants there, they were out for a relatively short periods, usually due to skin weakness or infection. Wish I had some answers for you.
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Hi everyone, Im starting TCH on 9/30 trying to keep up with what I really need to buy to be ready to fight this battle
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Hello ladies...I am still up North with my folks. Really enjoying my time here and building myself up for 2nd treatment. I think of you all daily and pray for your well being and I have told my Mom about you all and this site. I am just taking a little break and not posting as much. Feeling very good day 13...my hair has not fallen out but getting prepared. My face and tounge is numb but I think this is neopathy trying not to be overly concerned. God bless you all...M
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Hi Heidi,
This is very reassuring and positive-thank you!
Starting chemo next week...
Viji
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Hi to all our new friends.....this board is awesome and very informative...
I will be vacationing at the hospital tomorrow for my blood transfusion...I sure do hope they have those drinks with the little umbrellas!
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I especially like it when they have fruit in them...
. Have a restfilled day ChickaD.0 -
Lovewins, if you are having problems with your mouth make sure you tell your MO. Also you could try ice chips in your mouth during taxotere. My hair did not fall out til after my second tx. My scalp kind of felt tight right before. You are now started on your way to the finish line!
viji, you will be fine too. Waiting is the hardest make sure you both get on the thread for chemo starting in Sept. Its very helpful. Much love0 -
Lovewins my hair came out the night of treatment #2. And like moon, I would recommend ice chips too. They seemed to help me. Except now I have a weird aversion to ice in styrofoam cups so I bring popsicles to my infusions. Glad you are feeling better
Good luck Chicka!
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lovewins - if your face and tongue are numb you need to notify your oncologist, particularly since you are early in your treatment.
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I have found that Prilosec helps with the heartburn, and Claritin is supposed to help with bone pain if you are getting neulasta. Also it is important to stay hydrated, and that can be a challenge, even water can be hard to get down, so stock up on any favorite beverages. Also you should be eating enough protein - your blood cells get damaged and you need protein to make new ones.
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I called my nurse about my numb tongue and lips and even my nose...maybe it was more tingling? Not sure now, they wanted me to come back and have a mri on my head. I have read taxotere can cause numbness. Anyone else have a numb tongue? I am leaning more towards stop using ecig and wait and see...I hate to go against DR recomendation though. Nobody can make the choice but me I know this...struggling because I would have to go home early and I have chemo scheduled for nest Monday along with DR appointment. Hard to make up my mind.
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Miss Lovewins...yep I have neuropathy in my tongue/nose too, plus hands and feet...got progressively worse thru each chemo...hopefully it will get better now that I just finished my last big TCH chemo
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Good for you!!! I bet you are so happy to have that behind you ChickaD.
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Lovewins, I just had my 4th (and last) treatment of taxotere and cytoxan on Sept. 10. My tongue and nose were ok but, I did have numbness in my lips. It only lasted a couple of days. Also, for one day after my third treatment, the palm of one of my hands burned pretty bad. Hope that helps.
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Jarris...I can't wait to say those words my last treatment!! Thanks for letting me know. Good for you!!!
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Lovewins - I had numb lips & tongue after several of my taxotere/carboplatin infusions. Numbness there went away after a week or so. Wish the hands & feet would get better.
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Thanks ladies...I think I will wait until I talk to my DR on Monday. I am sure he wants to cover himself but it is almost gone now...if it get worse I will do the MRI.
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I too had the numbness/tingling in my face, but it was only the night and day after each tx, then it went away.
jarris, YAY for your last TX!!! I am sure you are so glad to have that behind you.
ChickaD, hopefully you are starting to feel better, this time for good!
I am 27 weeks PFC and all my SE's have gone away except the eye tearing. My eyes tear almost as much as when I was in active tx!
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jarris - yay!
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Hello Ladies, you were all talking about taking the vitamins the past day. Do you take those vitamins during Herceptin treatment or when you already completed with all HERCEPTIN? What about low dose or baby Asprin I heard that also help reduce reaccurance. Thank you!
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soriya - I started some of my supplements right after chemo ended, during Herceptin, but have added some and stopped taking others as I learned more and had different side effects after treatment and from hormonal therapy. I do take 81mg aspirin, but every other day. I tried to take it every day but had some GI issues - tummy ache and burning in the esophagus - I had reflux surgery in '95 so I don't want to create a new problem!
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Feeling much better today!
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