Weekly Taxol group
Comments
-
Hello everyone,
I am new to this thread. I finished 4 AC DD and should have first weekly taxol this Friday. I have had mouth sores during AC and would like to know if I will suffer the same fate through taxol. Could you please let me know if you have had this SE on weekly taxol?
Thank you!
0 -
You’re welcome all
- Thank you Taco for the encouraging words.
- Tomorrow is my first THP and I haven’t slept all week. I’ve put myself into a permanent panic attack.
- But I have no choice, have to do it.
- Thank you all for the suggested preventative ideas for all the terrible side affects.
- Well God speed then.
- Thank you
0 -
Hi everyone!
(& waving to Lolotte - hey girl!)
I'm supposed to start Taxol this Thursday. I hope it treats me better than AC. I ended up hospitalized twice for febrile neutropenia and had delays & dose reductions throughout my course of AC.fwiw, on the subject of icing hands & feet, I found 2 recent studies from different countries indicating there was a benefit.
https://academic.oup.com/jnci/article/110/2/141/44...http://www.sciedu.ca/journal/index.php/jst/article...
I'm planning to do it. I understand my center offers gloves but not booties so my dh & I will rig up some sort of ice pack & big sock thing.
0 -
Moth- there are the ice socks on amazon Nutracare (I think). They come with ice packs and you can buy extra gel packs to switch out.
The weekly Taxols are easy (well, my opinion with only 5 done). My MO has been thrilled with my blood counts (neutrophils around 1500). I also had febrile neutropenia on EC. I’m not taking any filgrastim or other boosters.
Idkidk - the worrying is worse than the infusion! You’ll see—- just long and boring and a lot of waiting around. Bring things to put your mind elsewhere (books, films, etc) We are rooting for you!
Lolotte- the only SE I’m having from Taxol is a rawish tongue. Not sores (had those on EC for a few days each cycle) but a constant just raw feeling. Food never tasted weird for me on EC but now nothing is really tasting much like anything with the Taxol. Water tastes sweet and everything else is really bland
0 -
@Lolotte19 i just had #8 taxol. I am not getting the mouth sores like I did with AC (which were like cold sores that came and went over a period of hours) but instead i would say my tongue is tender and it is not pleasant to eat scratchy foods (for example, fallafel, crispy breading on chicken or fish) or acidic foods. It is actually better this week than a couple of weeks ago. I have not found much relief from the salt and baking soda rinse. Sometimes i have put Anbesol on my tongue. But it does seem to have improved somewhat on its own this week
Also I have bern using ice on my hands during infusion and have not experiencedneuropathy. Maybe a prickle here and there but nothing constant. Some of my nails have brown spots. I did not buy fancy mitts. I just use the “specimen" ziplock baggies with a side pouch that they have in the clinic. Ice goes in the ziploc part and hands in the outer pouch
0 -
thank you for your answers!
0 -
Wishing the best to all of you starting treatment. I had no mouth sores with Taxol. I did rinse my mouth with warm salt water after each meal, as a precaution.
Hope
0 -
Well, gearing up for Taxol/Herceptin infusion #9 Monday and here are my honest observations:
With #1 and #2 the steroids made me jittery. Flushing and hot from neck up the next day. Difficulty sleeping.
After #2 it was standard to drop steroids if no adverse reaction, so I was happy to do so.
Week #4 I felt terrible. Not sure what was going on but suspect blood counts were starting to take a hit as the chemo worked into the marrow. Difficulty doing my normal cardio at the gym. After this I felt nearly fine for a few weeks.
Week #5 Developed minor neuropathy in small area of left hand, despite icing hands and feet since #1.
Week #7 Felt terrible, mostly tired. Red blood counts were dropping and allergy season was kicking in. The Zyrtec combined with chemo zonked me out.
Week #6-7 Foods began to lose some taste and tongue developed a bit of numbness at the tip.
All throughout chemo, I have had headache during the night of chemo infusion day, sinus pain on days 2 and 3 after chemo, mild sore throat, mildly sore GI tract all the way ALL THE WAY THROUGH. Bloody nose, again mild, mostly dried blood. Also, had some aches and pains particularly in areas I had injured in my younger years.
I am cold capping with mixed results. I have lost hair, but I could not cold cap during the first infusion due to dry ice being sold out everywhere days before because of storm power losses region wide. So, that may have caused about 20% of the hair loss that began between week 4 and 5. Overall at this point loss is about 40% and I have 4 more remaining. No bare spots yet but it is thin.
I met a young 20 something at the infusion center who was 2 years out from her diagnosis. She cold capped and highly recommended it to help with regrowth and morale.
Cold capping is a bit of a hassle, but it does keep you busy during the infusions!
0 -
Great info, Becca. Please keep posting as you work your way through the remaining sessions. I am always so curious to hear other's stories.
0 -
oh yes, forgot about the bloody dry nose-
I posted in earlier threads about fish oil to prevent neuropathy. That is the route I’m taking. Some MOs don’t like the antioxidant effect of fish oil.
I take mine two days out.
0 -
I have bought B6 100mg once a day and L glutamine 20gr for 4 days. I will also take the hair skin nail supplement for the B12. I hope to avoid neuropathy.
0 -
Lolotte, the recommended dose of l-glutamine is 30 grams per day, not 20 (at least that was the case when I used it). Good luck - hope the supplements work for you
0 -
- Thank you Amelia for the encouragement.
- I did my first THP today and fell asleep due to the 50mgs of Benadryl. Now I’m wide awake due to the steroids. I’m just very fatigued which may be from the prior A/C, who knows.
- I’m feeling a little tingling in my feet and hands and a little pain now as I write. I did ice my feet and hands, Sloan offers it so I did it. Wow cold.
- Till tomorrow
0 -
Hi Ladies! I have not posted much but I have a question that I thought some of you might be able to answer. I had my 6th out of 12 Taxol treatments this week. Neuropathy has finally reared its ugly head. Not bad but almost constant tingling. I would consider it to be mild. I met with my oncologist today and he said that I might only be able to do 8 out of the 12 treatments if the neuropathy keeps up or gets worse. Has this happened to any of you or do you know someone that this has happened to? I am icing my hands and feet during chemo and taking B6 and BComplex twice daily. I was really surprised because the neuropathy is not horrible yet but my doctor said they don't mess around with it, considering that it might be permanent. I'm just concerned about only getting 8 treatments. He did say that he did not feel that it would be any less beneficial to get 8 rather than 12, so maybe I am just worrying.....
0 -
https://www.verywell.com/glutamine-and-neuropathy-caused-by-chemotherapy-430158
Tld - I’ve linked an article on l-glutamine. If you do a google search you will find lots of other articles on this substance. I used it during my weekly taxol (30 grams per day, (15 grams twice a day) on the day of chemo and 3 subsequent days) and my neuropathy never progressed beyond tingling. Check with your MO, but I would recommend trying it asap. 15 grams is a lot - about a heaping tablespoon. Mix with a liquid of your choice and chug it down (it doesn’t dissolve). You can get it in a tub at GNC or your pharmacy can order it for you in 15 gram packets. Good luck
0 -
tld2017
I stopped after 8 Taxol because my neuropathy had gotten VERY painful. MO said if I had had positive nodes she would have pushed me to continue but with small tumor and no lymph nodes, she supported quiting. She also told me to take my port out after herceptin she was so certain that I wouldn't need it again.
0 -
Thank you, PatinMN and Taco! I appreciate your insight. I will get the glutamine tomorrow! I am hoping I can make it to chemo number 8 because it is really bothering me tonight. Ugh, cancer stinks, my friends....
0 -
My MO gave me gaberpentin (don't think I've spelled that right). My neurologist, who I see because of a seizure disorder, immediately increased the dose when he saw my hands. Neither physician is big on supplements.
0 -
Taco...My Gabapentin was increased to 900 mgs. a day. How much do you take. It's my burning/painful feet that's making my life miserable. What is your dosage?
Hope
0 -
is everyone doing dexamethasone during Taxol? I understand it is important for first infusion (or max two) but I can’t see it’s purpose beyond that. I get 8mg and want to ask MO to cut it to one or two.
I don’t like the side effects.
0 -
I had to have dexamethasone for the first 3 treatments. I was so surprised when I went last week for #4 and they said I wasn't getting that and benadryl since I haven't had a reaction.
0 -
Ughhhh .... not sure if I'm happy or sad. I wasn't able to do Taxol this week due to low neutrophils. MO says it won't be made up, just skipped. The only good part, I guess is I didn't have to wear the freezing cold cap.
0 -
nonahope - I was up to 1200 MG daily and still miserable. Also, check with your MO about what happens when you are better. I was told to taper it off rather than go cold turkey (but I also have a seizure disorder). Wishing sunny days ahead for all of us.
0 -
Taco...Are you "better"? I am so frustrated. I have read that you need to taper off of this medicine.
Hope
0 -
Great advice on here. My MO does not allow any supplements during the 12 week chemo run. Afterward, she said they are fine. Apparently, some chiropractors and massage therapists can also address/resolve neuropathy. Another recommendation I saw on here before beginning treatment was to use Nail Envy or paint your nails dark to save the nails from damage. I used one on my fingernails and the other on my toenails. Thus far, both are doing well. Actually, the IPO Nail Envy (from Amazon) has my nails looking the best they have looked by themselves in a long time.
I did want to know if others on here had a baseline PET scan and/or bone scan after diagnosis regardless of tumor size? I had an abdominal ultrasound and MRI due to a spot on my liver. Seven doctors have now said it is most likely an hemangioma. We plan to rescan after treatment, but obviously this is an area of concern. Seven does seem extreme, but Johns Hopkins where I had a second opinion uses a team approach. I did not have a PET or bone scan and am wondering why it is not standard at MO's practice. I see many who have received them regardless of tumor size or lymph nodes, so I think I am going to ask for one.
0 -
Becca , I asked for scans in the beginning and was told stage 1 , if there was something somewhere else it would be too smal for the scan to show it 😑 ,and that's what the chemo is for to kill any small cells so I then said then how do you know for sure I'm not really stage 4😳 she said my tumor was small and no lymph nodes involved and mine was found in under 6 months time
0 -
Hi Becca - I think I must have had every test known to man. I had a CT, PET, bone scan, bone density, echocardiogram, carotid and abdominal US, blood work galore, biopsy via MRI, mammogram, breast US, and probably some I can't remember. I also had another MRI halfway through chemo and had another PET scan right after I finished chemo. I've also had numerous ECG's due to atrial fibrillation that developed during chemo. So it has been quite an adventure test wise.
0 -
Motherofall6, thanks so much for the information. You have given me something to consider when going to my next check up. This diagnosis has me overthinking every single thing, but mind games aside, I think we have very valid concerns. I saw somewhere that an oncologist said treating cancer is like looking for a needle in a haystack, in the dark with a flashlight. There is a gold standard for treatment and care, but no slam dunks.
0 -
Nonahope - my neuropathy went away completely within 4 weeks of stopping the taxol. I did fine with the herceptin, even with a 30 minute drip. On Ai's for almost a year now. Went from arimedix (due to headaches) to femora and feel good. Have upped my exercise routine and my joints are better. But I am also about to be 72 and already had an achilles heel repaired and carpel tunnel surgery on my left hand before BC. I had a bone density test last fall - MO couldn't believe I had managed to not have one given the medicare guidelines. No other scans. Did 4 echos while on herceptin. I never tried it but I have read some people have used acupucture successfully.
0 -
I had PET, MRI, abdominal US and a few transvaginal US (PET showed activity - turned out it was an active follicle) after biopsy and before surgery. Then again I am in Europe and no one questions whether or not tests would be covered by insurance (I’m using private insurance not state health care).
My MO tells me there is a machine called a full body MRI which does not use any radiation or contrasto (she joked I could do one every month if I wanted). It sees soft tissue and bones and will be my go-to to check for any issues. However I think it also only picks up problems once they are quite problematic.
If I were in the US I would seriously consider using Europe as my place to go for anything insurance companies refuse to pay. Out of pocket prices for a PET were €1000 and MRI €385. Not cheap y any means but guessing much less than out of pocket in the US.
0
