Weekly Taxol group
Comments
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For those on L-Glutamine... is that something your MO recommends? I start weekly Taxol the end of June and am rather frightened of the neuropathy and body pain. Are there studies that show this helps? My MO is against almost all supplements during Chemo so having something on paper would be helpful.
I would also be curious about others' experience if they also have fibromyalgia. Does Taxol cause additional pain and flares?
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Paula - thanks! That's exactly what I have. Just mixed 10 grams of the powder with some tea and down the hatch. Wasn't bad.
6cats - I asked my doc about B6 to help keep with Nuropothy. She said there were great studies on the L- Glutamine and said she believes it really helps. She told me to purchase the powder form and take 10 grams (2 tsp) 4x a day - starting 24 hours after chemo.
Also, I'm wondering about this body pain I was warned about by my doc - none so far. But I'm only on day 2 of my first Taxol treatment.
Hope that helps.0 -
Rosina - I never had any body aches/pains on weekly taxol. It's one of those side effects that hit some people, not all. Hopefully you're one of the lucky ones! I should note that I take 650 mg Tylenol 3X per day, plus glucosamine/chondroitin 3X per day, for arthritis, so maybe that helped ward off the body aches and pains that some experience.
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I had body pain on taxol but I got dose dense taxol and got the nulesta shot. Days 3-4 after chemo were my worst for body pain. I did have to take a low dose pain killer at night to sleep. During the day I took Advil and used a heating pad. After days 3-4 I was fine. So I am not sure if my pain was from taxol or the shot.
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Thanks Patin!
Imcclure - thanks as well. I take a week of Nupagen shots starting day 3 after my DD Taxol. Towards the end of my shots I do feel achy mostly in my lower back. I take a 600 Motrin at bedtime and regular Advil during the day if I need it.
If I start feeling achy days 3-4 then ill know it's probably the SE from the Taxol instead of the shot.
Take care and have a lovely day!!0 -
My pain was primarily in my lower joints 3 days after each tx. My MO told me to take claritin the day after tx and for three days following along with benadryl twice a day for the same amount of time. It worked to get rid of the pain. Before that I was taking extra strength tylenol and that worked too.
I added B6/B12 and glutamine to my vitamins when I started taxol and I have very little issues with neuropathy. I just had #9 on monday and I started taking Biotin also to get some freakin hair to grow. LOL So far I just have peach fuzz. We will see what happens.
I did find that I felt better when I stayed hydrated. I try to drink 3 liters of water a day. I definitely feel it when I don't.
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Rosina, I had fairly significant bone pain, mainly in fingers, toes, wrists, heels, ankles, knees plus some in thighs, shoulders and back, but I was on dose dense Taxol (no Neulasta shot). It would start some time on Day 3 and last until Day 5, sometimes even Day 6. It seemed to get a bit worse with successive rounds. Also had some neuropathy, but that didn't show up until the third and fourth rounds (seems to be getting better now, 2 weeks post chemo).
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Skingirl & Caitlin - thanks so much for the feedback. I take Claritin daily because of allergies here in northern ca. So that's a start. I am also on dose dense taxol. 3 more to go. I'm quietly waiting for the "Mack Truck" effect of tiredness that I had with AC around data 3-5. It's a good feeling havin no nausea and feeling pretty well days 1-2 but feeling like its the calm before the storm.
Caitlin - you give me so much hope. My last treatment is July 9 and am planning a a trip to Disneyland with our little guy. It's a big park and want him to see it all. I know I'm going to cry just seeing it through his eyes. Geez what a sap I am tonight. Lol.0 -
Rosina and 6Cats,
I have just completed my 10th taxol treamtment and have had no body pains. However, that may be due to my monthly B-12 injection plus my 300mg of Vt. B-6 to prevent neuropathy. I also drink lots of water each day and into the night. So far my fingers and toes have had no tingling nor pain, but my nails are lifting. We are all so different in our response to chemo and every other drug, I am sure.
I was not told about the L-Glutamine by my MO or nurse navigator. Amazing how different our treatment advice is pertaining to supplements. Thank God for the posts on these boards. We learn so much from one another and get such wonderful support.
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Ok Day 3 post infusion and oh boy am I really feeling the aches and pains - 600 Motrin isn't cutting it!! My ovaries even hurt. Going to walk and use a heating pad to see of that helps.
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The aches and pains set in on day 3/4 for me too.
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I just had my first Taxol (first chemo ever) today and honestly feel great, but if you can guess the time of this post (4:30am) it seems I just discovered the first SE! I have also been having crazy hot flashes. I had been experiencing very mild ones after going into surgical meno. buy these seem to be kicked up a notch!
I am very curious to read about all the comments regarding B supplements and L-glutamine because every time I ask my oncologist if I can take or eat anything to help with side effects (lessening or prevention) he says no. Even something as simple as the suggestion to ice hands and feet to lessen the chance of loosing nails!
I honestly feel so cluless! should I stop wearing nail polish asap? should I crank up my protein consumption? should I push for supplements? let me know what you think!0 -
Ggtexs, I learned about B6 and glutamine from these discussion boards, and then did some Internet research. There are good, recent studies showing that these supplements help with neuropathy. I found that my chemo nurses were more up on methods of dealing with side effects than my oncologist. The nurses gave me a print-out on how to use the glutamine, along with a bunch of sample packets of Glutasolve powder. I ended up buying glutamine powder at GNC. I never had any nail problems during my 12 weekly taxol treatments, although now they are thin and brittle - probably due to being somewhat anemic for those 12 weeks plus. I think nail problems are fairly uncommon on weekly taxol. I did try to eat more protein, although I craved carbs. I had some diarrhea after my first treatment, but was mostly constipated after the others. There are plenty of good over the counter meds for that - I found that Sennokot pills or Smooth Move tea worked best for me. Immodium for diarrhea, and Preparation H wipes plus Desitin cream for soreness. I tried to walk 30 minutes or more 4 times a week, and I continued to work throughout treatment except on treatment days. overall, I was very surprised at how well I felt all during chemo. I hope that is the case for you too!
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ggtexs -- I too have an MO who is anit-supplement. I've asked repeatedly. Her final answer was that if I couldn't stand not taking them, then I could take one plain-old-Centrum Silver -- nothing that has anything special in it (for women, immunity, eye health, etc).
B-vitamins seem to be the thing I need the most, so I have been doing research and eating more of anything with "B" in it. My theory is that if I can buy it in our small town grocery store, and if it is something that can be included in a family recipe, it can't hurt. My only concession to supplements has been that once a week I purchase a "high Protein" drink (Bolthouse Farms, Protein Plus). Through small diet modifications, I have eliminated almost all the "B-vitamin SE" -- cracked tongue, sores in mouth, sores in throat, diarrhea). I haven't completely gotten rid of the cracks in the corner of the mouth -- but they are better.
I haven't done the research on L-glutamine yet (I start taxol in about three weeks). But am going to try the same approach. I think amino acids are a little harder... but upping the family diet in B vitamins has been relatively easy (and our family's diet isn't totally weird).
P.S. the reason my MO is so against supplements is that there have been studies that show that vitamin C interferes with the effects of some cancer drugs. According to her, there hasn't been enough research on the effect of individual vitamins on the cancer cells. Remember that the goal of chemo is to kill cells -- the goal of many supplements is to build healthy cells (and that can also mean healthy cancer cells). Once I'm done with chemo, she said she didn't care what supplements I take.
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I've found that the DOCTORS want to prescribe meds and the nurses want to give you natural suggestions. I found out about all the vitamins and stuff from here on this site. I approach things with my MO this way. I say 'so I started taking B6/B12 and glutamine because I started feeling some tingling and it seems to be working. Should we add these to the medication list?' It's almost like they are blind to anything unless is medication/ pharmaceutical related. When I had joint pain, I asked the nurse to find me something that I could take that WASN'T another prescription. They came back with the claritin/ benadryl regiment. Go to your appts armed with information. That helps too.
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I take a great deal of supplements.. Almost all of them as suggested by the "guide to nutrional healing".. Get a copy. It is very helpful. Vitamin C is supposed to help, but the giant medical complex doesn't want to do the research on it. I take a lot of stuff, and I am seeing results.. Just finished 12 weeks of neoadjunctive taxol, and am taking another 4... I am trying to shrink down this tumor as much as I can, and I am taking everything I can.
Modern medicine doesn't have all the evidence, but I know that there are people out there that have survived for a very long time with supposedly incurable cancers. I am metastatic, so I really have nothing to lose
The ONE thing you need to take is melatonin.. about 20mg+ every night. This will work very well with helping you sleep. And aspriin. Check out the rest from the book I mentioned. I am finding that the stuff the doctors, nurses, and other people at the hospital say doesn't always make sense, and when questioned, they don't have answers... Like "don't take supplements before your bone scan".. or "Don't take fish oil before a fine needle biopsy".. Or whatever...
Take whatever you feel makes a difference.. I do.. and 12 weeks into taxol I still have my hair..
Your mileage may vary
The book is "Prescription for Nutritional Healing" 5th edition.
It's awesome
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It is important to do your research and discuss meds and supplements with your oncologist and chemo nurse.
We don't have a crystal ball and have no idea your medical history, your present medications, family history, allergies, etc. So PLEASE don't just ADD anything that we may have used - supplement or over the counter without first knowing how it pertains to you specifically.
My adventure into the cancer world came with me being perfectly healthy (except the cancer), running 6-7 days a week, with 3 presc. meds in my arsenal (one for sleep, the other two are mood stabilizers). I say this to point out to you that adding a sleep aid - natural or otherwise - was not just a given, since I was already taking one.
And there was absolutely no reason for this gal at 48 to start an aspirin regimen.
I chose not to take the supplements which actually WERE suggested by my chemo nurse for my chemo regimen. I had located a study about excess Vit B actually causing neuropathy in some people (not cancer related). Thought how would I know if it was the gazillion mg or the weekly Taxol that caused it. Discussed it with my nurse and decided against it. I did not have or get neuropathy.
Chose not to ice toenails or fingernails. Eventually big toenails and the one adjacent toe's nail on my right foot departed. Nails were growing in and I did not have any liquid, goop, etc. underneath. Oncologist thought they were more related to my running than the chemo because of the lack of anything but new toenail underneath. I thought they were related to the chemo, but I've lost toenails before (dropped a pool chair on one as a college lifeguard, one 'died' after a pretty brutal hike as a young mom, etc.). It wasn't a huge deal for me and I kept running through chemo - with and without toenails. Lost no fingernails with AC or Taxol. They did get slightly brittle AFTER but bounced back.
Sorry this is so long - but prefer to give a bigger pic - so you can maybe 'see' what another's experience is.
I am not anti meds, supplements, OTC, etc. I've read enough stories on here and read studies of patients benefitting to know that there can be benefit.
Prefer to get the vitamins and minerals naturally in my food and in the great outdoors (Vit D) - but also have to guard sun exposure due to Dad having had melanoma and waaaaay too many hours 'tanning' by the pool as a youth and as a lifeguard.
Hugs on the journey!!
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Skingirl - what is the Claritin/Benadryl regamin for pain? I've been miserable the past two days - the aches are everywhere. Been taking Norco and Motrin but they just take the edge off. Any suggestions would be great.
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Rosina, I took Norco too and then extra strength Tylenol, but like you I found it didn't always completely do the trick. The good news is that I found, and have heard other people say, that the pain didn't last more than a few days. Hope it will ease for you soon.
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Rosina,
I was advised to take an Alleve and a Claritin on the day of chemo and for the following two days afterward. Those prevented my having any pains. while on the AC regimen.
Now that I have moved on to Taxol and Herceptin, I have no pains whatsoever. I know we are all individual in our responses to treatment, and I am happy that we share and learn from one another.
The only serious side effect that I have had is a DVT behind my right knee after beginning Taxol and I am taking a blood thinner to control that. My left ankle remains swollen and my MO says that may be a permanent SE for me. Oh well, so much for my sexy legs and ankles.
I will have surgery in late July or early August following my 6 months of neoadjuvant therapy which has diminished the size of my tumor which is in my lymph nodes under my right arm. I also have more positive nodes there as well as my right clavicular area. I am in hopes that the chemo has taken care of this prior to the surgery that I will have.
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honeybair~~That's very interesting about the DVT and swelling of the ankle. I developed DVT in the femur area of my left leg between finishing AC and starting weekly Taxol. I've been on Lovenox injections twice daily since Feb. 15. My ankles had been swelling from Taxol usually for a couple days a week, but I noticed with Taxol 10, 11, & 12, it lasted about 6 days. I finished Taxol 2 weeks ago yesterday. Now, my right ankle is normal, but the left one where I had DVT is still swollen. I'll have to ask the onc when I see her on Wednsday.
Blessings
Paula0 -
My dvt/pe developed during AC, so I'm on daily Lovenox for 6 months.
My biggest problem side effect at the moment is loose stools and abdominal cramps since my last treatment, last Wednesday. I've had somewhat loose stools all along with Taxol, but only since #9 has it been a problem, with increased frequency and cramping.
I'm really not looking forward to the last three.
I had a molar fall apart this week as well. Has this happened to anyone else? I'm feeling pretty crappy right now!
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Morwenna,
I hope you get feeling better. Sounds rough. I went to dentist after treatments and am ok. I think some of the chemo drugs can do stuff to teeth. I would ask the oncologist about that. Best wishes as you finish up you last three chemos. I was so ready by my last 3. I am 5 months out from chemo. Feels so good to be improving daily.
Rose
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Paula, As I told my ocologist upon informing me that my swollen ankle may be permanent,"Cancer is the gift that keeps on giving." She did not smile or laugh.
Does anone know how long it will take for the chemo to completely leave our bodies? i cannot find that info anywhere in my research.
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Morwenna,
So sorry to learn you are feeling so lousy. Yes, I too had a tooth to break, my front lower cuspid. I resemble a jack-o-lantern. Will have repaired after treatment, surgery are complete. At least it was not an upper tooth.
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Chemo has to effect teeth. During my horrible body pain SE, my teeth even hurt.
Today I'm 6 days out from chemo and still achy, but at least today it's manageable and I can walk.0 -
Thank you everyone for your kind words of wisdom. A couple of questions more
a) knowing we are all different , when do you think I might loose might hair? this is my very first chemo treatment!
b) did you ice hands/feet during infusion?
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ggtexs~~Hair usually starts to loosen about 14-17 days after first infusion. I cut my long hair in a pixie the day before chemo. It started loosening in exactly 2 weeks. My AC was every three weeks, so the night before second infusion I buzzed it. I never shaved my head. It isn't necessary. I hated my wig. It's too much hair for me, so I wear scarves, hats, & tee shirt wraps.
I finished 12 weekly Taxol on May 17, my hair is coming in slowly.
I never iced my hands or feet. I have no issues at all with my hands. I would have had an easier time with my feet if I'd stuck to the L-Glutamine. I do take vitamin B12 and B6. My neuropathy hasn't been really bad.
Blessings
Paula0 -
My wife did ice her fingernails and toenails. She finished her 12 weekly Taxols 4-25-13. Had some minor tearing to 1 finger nail, but no lifting, no blackening. She just got a pedicure last week. Also, popping up seemingly overnight last week= eyebrows. She also has stubby lashes.
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My MO told me my hair would fall out around the time of my 4th treatment (weekly taxol and herceptin). And it did. So I think you can count on that. It's helpful to plan for your wig, if you're planning to get one, in advance of that.
With regard to icing hands and feet, I did nothing. I had a problem with neuropathy, which turned out to be permanent. This isn't typical, but it happens. My advice is to jump on any symptoms you have. Make sure your treatment team knows if you have numbness or tingling in hands or feet. I don't know if any of the current treatments work for everyone, but I would do whatever was possible to avoid neuropathy. They may also be able to adjust the dosage of your drugs. This wasn't presented as an option to me, and I'm sorry I didn't push harder.
Good luck, and good health!
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