Weekly Taxol for Stage 4
Comments
-
surprised they wouldn’t be giving premeds - the premeds are given by IV with Taxol, unlike some other chemo where you get pills to take at home - could that be a point of confusion, maybe?
I tried to get doc to eliminate steroid and Benadryl after the first two, the best I could get from her was a dose reduction
0 -
Who knows? I always have anti nausea meds on hand. Hate that feeling. The MO and I have only been together a year. She’s not the warm fuzzy type nor does she seem to be a rule breaker. If INS says this hormonal inhibitor then that’s what you use even though this other one works for me with minimal side effects. She has a new nurse and a new pharmacist. I have no way to reach them except leave a message. It took three days to get bp meds due to Afinitor. I’m still in touch with my last oncologist who returned to his home country. I want her to acknowledge me as a person. I have kids. I don’t always fit the cookie cutter mold. None of us do. We’ve made it this far. Acknowledge it. Listen to us. We’ve been around the block. This journey requires a team. We are part of the team.
Another nurse filled in on Friday and she was busy juggling calls. She thought the MO would explain it to me. At least she answers emails promptly. I think I was just given the party line. Sorry for sounding jaded.
Covid and divorce is really playing havoc on who’s available to be around. Plus I have 24/7 of my DD and my son is struggling at his dads. He’s going to in person school and we thought it would be best for him to stay there. It stinks but I’m not superwoman. Maybe after the roids on Thursday😂.
Thanks for the advice.
0 -
Katy
Thank you for all the info. I will have my third infusion on Thursday. Of course it will depend on my wbc. I was told last week if it is too low they will change me to two weeks on and one week off instead of the three weeks on.
So far I agree side effects have been tolerable. After the first dose I did have a lot of bone? Nerve? Pain. But the second treatment was better. Hair is hanging in but getting pretty thin. So I'm sure this will be my last week.
Fingers crossed this is the one!
0 -
Olma61
Thank you..this is great wig information. I will check it out. I like that you are having fun with your wigs and changing it up!
0 -
Glad it was helpful! Wishing you a productive and safe Taxol journey. xo
0 -
I have done 3 taxol, last one with carobplatin ( which I get added every 3rd week) then ended up having to take 2 weeks off because of low counts. Just had my 4th one ton Monday but noticing my face has gotten very puffy and I swear my eyesight is not quite what it was.. Other than losing my hair after the second round and a bit of numbness in a couple of my toes things have been going not bad, Just wondering if anyone else has gotten the puffy face.
0 -
I got the puffy face! I think it's from the steroids though my MO also said that taxol can cause a bit of generalized edema which can show in the face as well.
Are you icing?0 -
snowycrocus
I just finished my third taxol treatment and haven't noticed a puffy face yet. Curious to know what carobplatin is and why you get it. I was going to ask at my next appt if there was something else to add to boost the taxol.
On a seperate note do you guys follow your tumor counts? I don't have my recent one but my first dose only decreased tumor count by 35 for one and 10 for the other. I know it takes time but was hoping for a larger number after first dose. Sorry I'm new to all of the time so I don't remember what the tumor counts are called.
0 -
Jizn, my doctor checks my tumor markers every couple of months. I don't think they are a be-all and end-all, just a part of the picture. My doc says he doesn't "treat numbers," so he takes everything else into account. If my tumor markers rise a little, I'm not too concerned but if they skyrocket, then, yes!
Snowy, I'm betting that it is the steroids, too but be sure you mention it to your care team. steroids in my pre-meds didn't make my face puffy but I used to turn bright red and it would last until the next day. They are giving me such a low dose right now that I haven't had that reaction this time.
Katty
0 -
so I posted on other threads that my lung met woke up and decided to start growing & we're scrambling to change my care plan, I'm leaving one trial and possibly signing up for another...in the meantime my trials nurse said how about we raise your taxol back to 100% this cycle, just to drop a bigger hammer on this.
ugh. Thursday was day 1, I have way more bone & muscle pain than before, I'm not quite but almost having a bit of nausea, and have no appetite. Booo. For the first time in months I thought about the fact that I have opioids in my cupboard if I need them - didn't, but was just glad to have them there.
Not sure what I'll do for the rest of this cycle (2 more taxols). I mean it's just 2 weeks. Maybe I should just power through it at the higher dose. After this we might be switching to abraxane. I wonder if that will be easier?
I wish dosing was more clearly understood. I needed dose reductions for early stage treatment as I was getting febrile neutropenia. Of course I have wondered whether the dose reductions meant I didn't hit it hard enough the first time around & that's why it came back
0 -
Hi Moth, I’m sorry your lung met progressed and you are having terrible SEs from Taxol. I have nausea from Taxol, not severe but a nagging feeling. I take the nausea pills the doctor prescribed and I feel much better. Only downside is that it makes me very tired. I hope your MO can give you something to relieve the pain and that the next two weeks are easier for you. denis
0 -
Don’t go down that rabbit hole. You made the best decision with what you knew at the time. Trust yourself.
I had my first taxol. Infusion lasted 15 min before I reacted. Now I feel run over by a train. I’ve never taken so much Tylenol. I wasn’t expecting it. Kinda scared since I had a quarter of the infusion. I did get the red and puffy face.
Will try again on Thursday with more premeds - benedryl and steroids and slower drip. Otherwise will try axbrane.
Anything to counteract this run over feeling? I thought it might have been from my reaction and the weird slump I was in trying to recoup from IV benedryl and steroids. I could barely keep my eyes open. Note to self take a travel pillow.
No superwoman here.
0 -
Thanks everyone for your responses , the puffiness seems to be slowly going down, and it is very possible its steroids . Had another Taxol on Monday, after I talked to the on call onoc, she has decided to lower my taxol and the carbo to 80% starting next treatment and see if that makes a difference,as I have been having really bad dizzy spells upon standing and walking and Sunday I had actually passed out as I was coming in the house from getting the bloodwork done. Scared the poor hubby half to death, and I am now not going anywhere without my rollator, my blood pressure has been up and down at the drop of a hat since I started the taxol .I am noticing the change in my vision again after this last treatment, I have a hard time focusing on things close to me, that is twice now, day 2 after treatment hopefully it will clear again in a couple of days. I am definitely noticing a lot more fatigue after this treatment, I just don't have the energy to do anything.
Jizn: When I asked my onoc about the carboplatin, she said it works very well with taxol and hopefully it would help get my lungs cleared some. My doctor checks tumor markers about once a month with my bloodwork, unless they really jump she doesn't pay a lot of attention to them but when they had gone from 45 to in the 300's we knew something was going on and it was time to change treatment. I hope to see a drop in them next week when I do blood work but she also said it isn't unusual for them to rise a bit more before going down when just starting a new treatment.
Moth: No I am not icing, after the first bit of numbness on the bottom of a couple of my toes I have had nothing
0 -
snowycrocus
Thank you for the information. This site is always so helpful. When I read through everyone's comments I actually take notes so I have ideas to discuss with my MO. I appreciate all the knowledge eventhough I wish we didn't need it.
Thank you all for being so helpful!
0 -
Managed to make it all the way through! Yippee! Bone pain seems to be at its worst three days after. Tylenol not helping. Hope Claritin kicks in soon.
My facility doesn’t check tumor markers. I do have red swollen face the first day or so. Now I have a big tick body. Should walk. It’s absolutely gorgeous outside.
0 -
zillsnot4me
I just had my 4th infusion and ended up getting a tight chest and red face almost immediately after infusion started. I did not have this on my first three infusions. But those infusions were slower drips. So they stopped infusion and gave me fluids. When they started it again they started the slow drip. No more issues and red face went away. Do you think this could be causing your issues too. Are they giving you a slow or normal drip?
On a good note my tumor markers dropped to 173 and 243 that is over a 110 drop in one and a 120 drop in the other. Very excited since they have not been this low since February. Trying not to get to excited as that happened on zeloda and verzenio too and they stopped working in a few months. Here's hoping.
Food..has anyone heard that caffeine interferes with taxol? I asked my nurse today but he said he had never heard that before. Was wondering if anyone knew and if not would I ask a dietician or a naturopath dr?
0 -
Hello to everyone - My name is Grant and my wife is Liz.
Liz will be starting Taxol on Dec. 2. This will be her 4th line of treatment since being diagnosed stage IV in Nov. 2018. Liz started with Xeloda which helped till June 2020. We're praying that she will tolerate the Taxol and it will be effective.
Prayers to all.
Grant.
0 -
HI Grant, I just had my 25th taxol last Thursday. Icing has kept neuropathy at bay & for the most part I've tolerated it well (though apart from early cycles in March - May & this last cycle I've been on dose reduced. Full dose whacks me a bit harder but still completely tolerable). I hope taxol works well for Liz.
0 -
Hi Grant,
I have been on taxol since mid-September and I'm finding it very tolerable. After a few infusions, I did have to have a 10% reduction and that cleared up some issues I had with mouth sores and serious muscle aches. The neuropathy I had while on xeloda has increased, so I am getting more diligent about icing. I have lost my hair but that's a minor issue for me. I wish your wife well on this new protocol and hopefully it will be a successful one!
Katty
0 -
Hiya Grant. Taxol isn’t bad. I’ve had four rounds. Still trying to get a feel for it. These ladies are very knowledgeable. Ask away. Good luck to your wife.
Anyone get bloated? I feel like a tick. Using my lymphadema pump daily.
Do you take clairtin for bone pain? Once a day?
Hoping these two side effects simmer down soon.
I hope those rumors about hot baths or caffeine aren’t true. A cup of tea and a bath are my go to for comfort.
I crave a cheeseburger on the 4th or 5th day.
I started losing handfuls of hair Friday night. But still have enough to look decent. Lost it quicker on AC.
0 -
anyone have a yucky taste in their mouth? Any solutions?
0 -
Zillsnot4me - made me smile about your cheeseburger craving!
Thank you all for the positive comments and wishes. Liz had her first infusion yesterday. They did it slow so it went pretty well. Premeds like Benadryl made her pretty drowsy. She had some additional bone pain this morning and her face just a moment ago got a little flushed and she said she felt hot.
Forgot to mention that she got some tingling in her feet about 6 hours after the infusion. She put on some ice booties and that made her feel better.
Praying for all the best to you all!
Grant.
0 -
for the nasty taste and any queasy stomach issues you may have - I used Ginger Chews or Panda Black Licorice or other licorice flavored hard candy. There are also Xylitol mints which have an added benefit of helping with dry mouth and avoiding sores
Good luck to all the Taxol warriors. Thanks
0 -
I saw my MO yesterday and shared my concerns about my increasing neuropathy which is now at stage 2. He decided to put me on a 3 week on / one week off Taxol regime and added one baseline dose of Gabapentin at bedtime per day. We will re-evaluate in January. Other than the neuropathy, things are going well as far as side effects.
I hope everyone is doing fine and finding some enjoyment during the holiday season!
Katty
0 -
I highly recommend Claritin for the bone pain. I take it daily now and my last two infusions didn’t have any. No pain killers needed.
I take steroids the day before, in premeds and that night and again the next day. That one little benedryl in premeds always win. I hate not driving as I can be there for hours.
Drink drink drin
0 -
Zillsnot4me - Liz had a TERRIBLE time with bone pain after her first infusion. The evening of was not bad but day 1-4 afterwards were really bad. Liz was taking about 3-4 times her typical amount of hydromorphone and it was only taking the edge off the pain. Yesterday was day 5 and it was considerably better! I'll mention the Claritin to Liz and see what she decides. She goes in for her 2nd infusion tomorrow.
Prayer for healing to all!
Grant.
0 -
When I was on Gemzarfor two months a couple of years ago I took Claritin for a couple of days before and a couple of days after to prevent bone pain . I didn't have any so that may have been what did the trick !
0 -
hi everyone ! quick back story.
mom got breast cancer in 2018- surgery, chemo rad and hirmonal therapy. thispast October the cancer progressed to her hip/sacrum
We now have just found skull Mets on this weeks head scan - no brain involvement.
However her her2 was initially negative and now it is positive ( in the sacrum biopsy)
The delay I starting anything since end of October was this re screening of the her 2
Her treatment now , after the her 2 change and the skull Mets will be taxol/perjetta/herceptin
Couple of questions if anyone has some time to chat!
A: how long is e average first line taxol course? The oncologist has mentioned 12 weeks
Is it 3 times a month ? Or once ?
B: herceptin and preheat are infusion yes ? How often does this happen? After chemo how often ?
C:any tips or tricks for the taxol?
Sorry- I’m a newbie to these sites and not well versed -
Thank you In advance
0 -
hi there,
From what I know, Taxol for HER2 positive women is usually four to six months, depending on how well the patient can tolerate it. If she tolerates it well, the MO might want to continue it beyond the 12 weeks.
I got Taxol infusions weekly for the full six months. I had a scan after about 12 weeks to see how well it was working.
weekly Taxol is common for metastatic HER2+
Herceptin and Perjeta is given every three weeks by infusion and continues every three weeks even after the initial Taxol is completed.
There is a Herceptin shot also and a brand new combined H&P shot but not all cancer centers have it yet. The shot is also given every three weeks
0 -
CandM. Sorry you’re here. Olma61 glad you could answer her questions.
I ice my fingers and toes to prevent neuropathy. Unfortunately after 8 sessions have some some minor tingling. The dead spot appears to be under my big toe. Not a happy camper. I also take B6 and B12 with my oncologists permission. Just over the counter standard dose.
I take Claritin every day for the bone pain. I feel my worst three days out. Which means cough, stuffy nose, low grade fever, fatigue, some nausea. Take Tylenol and lay low. I feel progressively better each day afterwards.
My nails are splitting. Are you supposed to wear nail polish?
0
