Weekly Taxol group
Comments
-
jayjay,
I did have a lumpectomy last August, right after my diagnosis. I started chemo the end of Sept.2012. Now I am almost done w/taxol. The next step would be RT, but I am still considering having a MX. I will be seeing the BS tomorrow, so will know more then. As for the A/C treatments, my MO told me what I would be getting, how many, how often. Were you given an option not to have the A/C regimen? I know it is based on your pathology, grade, stage. One thing I've learned since this started, everyone is different. I just wish mine had been easier.....
0 -
Dakota - I too had restless leg syndrome! I have to get out of bed several times at night and walk around to calm them. It was bad with the first taxol ... my second taxol it was better but MO lowered my steroid dose to 13mg. I have 2 more to go also. I'm going to beg for less steroid again and hope that helps with the restless leg. Its all such an adventure. Just glad A/C is over.
Many hugs,
Cathy0 -
cthynsh,
I think I have RLS as well. I also have the neuropathy. It is hard to get sleep because they drive me crazy. Started during Taxol. I am 6 weeks out from my last chemo this wed.
0 -
So, what causes the restless leg syndrome? Is it the steroids or taxol?
I'm going to ask my onc about it. There must be something hat can help it. Right?
If here is, I'm going to find it.
I start taxol on March 1st.
Blessings
Paula0 -
Adagio, what a scary thing to happen. I'm sorry that you had to go through that!
Do they have any plans to prevent this reaction the next time around? You must leery about taxol altogether.
Hang in there,
Peggy0 -
macho-mouse..... I just noticed that you start TH this tuesday..... that the same day i have my 4th....... i'll be thinking of you..... and let me know if you have any questions about the first one...... i was more scared then i needed to be.....
waiting...... my MO was pretty great about options..... especially since i fell in the consider group...... she originally talked about the standard treatment which starts with the what you had..... but when i started saying i don't think so she offered the 12 weekly taxol/herceptin....... and even then she said it was up to me since there was no clear guidance for my DX in terms of chemo......
after reading these groups i'm learning that i've been pretty lucky with my DR's...... i loved my radiologist (needle bio, mri) and my BS was incredible...... but like you said everyone is different....... i was immediately against an MX unless it was really needed but everyone was comfortable with the lumpectomy and radition.....
speaking of radition has anyone heard of or done the partial breast radiation...... it's twice a day for a week and focused so you can still have options in the future......0 -
The funny thing is that for 48 hours after finishing Taxol and stuff, I feel almost nomal. Then joint aches fatigue, bad taste and no appitite--sick feeling, until next treatment. Three more week;u pf twelve to go.Then a month off before rads. All body hair gone. I feel 20 yearrs older. These boards and advice here has been my cinstant source of advice, Love the port. Hugs to all.
0 -
I think the RLS comes from the Taxol/steroid/benadryl combo. During my second round I begged to reduce premeds and the RLS was definitely better. The neuropathy gets better after about 4 days. Day after I walk around like I'm 105 yrs old. I need help getting up and moving around but by day 5 I am much better.
mareluna - 6 weeks is awesome! I hope the final lap is an easier one.
(((hugs)))
Cathy0 -
Jayjayc- Yes, I start Taxol on Tues... first of the chemo treatments. I just need to get thru the first one. Too many horrid thoughts running thru my head about the unknown. I had my eggs retrieved this past Thurs and embyos frozen just in case I walk out of this infertile. They put me on Doxycycline which messed up my stomach... Every time I swallow anything hot/warm I have this burning right above my stomach and right under my ribs. Not the way I want to start chemo considering what it may do to my stomach.. Murphy's law. Will you come hold my hand on Tuesday!!!!
0 -
cindi - have you had any neuropathy from the taxol treatments? I know what you mean about the aches and pains - they are all over - and the annoying thing is that lying down just doesn't seem to help at all. You are on the home stretch now - so hang in there!!
0 -
macho-mouse....
consider me there on tuesday, in spirit if not body
I felt the same way about the first one..... i.e. lets just get this over with..... almost stayed in my car and then almost ran out of the waiting room..... BUT I'M REALLY REALLY GLAD I DID IT..... and it wasn't bad at all...
I haven't had any stomach issues yet...... haven't even needed to take the medicines they gave me (hope I didn't just jinx myself)....
0 -
Jayjayc, I have had 4 taxol treatments, to avoid burning pee I drink at least 2 liters of water everyday and NO caffeine. If I don't drink the water, the burning kills me! Hope this helps.
0 -
I too would try to drink lots of water everyday when I started chemo in July through December. It was harder in the winter to get it down. I never could do 8 glasses a day though.
I must say I did not get the burning issue except for once on the AC. I got one antibiotic pill for that. Think it was a yeast infection.
0 -
I get my last AC this Friday. I get it every 3 weeks, so I guess it will be that long before I move on to 12 weekly taxol.
I'm really nervous about the RLS. My onc only gives pre-meds for the 1st 2 tx, then if there are no bad reactions, they don't give them anymore. I have to say I'm nervous about getting more steroids than I do with AC. I think coming off steroids is the hardest part. At least for me.
Is there anything they can give for the RLS?
Blessings
Psula0 -
jayjay,
I am hoping to find out about partial breast RT when I go for my consult. I hope it may be available, and I may be a candidate. I am in NYC. If it's not here, then where do you go? Would do anything to try to make this part easier.
0 -
I am three treatments in to weekly taxol. It has been pretty predictable. My joint aches are pretty bad on Sunday, following Thursday treatment. Soteria and I are treated at the same place. This week was my first week without premeds and did just fine. My nurse stayed with me for about 20 minutes with the rescue kit which thank goodness was not needed.
Paula I would imagine the would give you the three weeks. I was on dose dense AC and they gave me two, but I ended up with the stomach flu so I had three.
I had my yearly with the ob today and we started discussing a hysterectomy in the fall. Anyone else had this done yet?
0 -
I always had the premeds. The pepcid, steroids, benedryl and the taxol. I am glad I did too.
I had my taxol three weeks after ac. Good luck ladies. Nite.
0 -
Politico mama. Why the hysterectomy recommendation? I see my gyn in may and want to be armed with good questions. Thanks!!
0 -
Timbek being 33, done having kids, and having strongly ER pos. Cancer. She said the current recommendation is for one. I go back and forth, but I certainly don't want to feed this crap!
0 -
Politico I will be removing ovaries and Fallopian tubes in April. I have BRCA 1 mutation and triple negative. So I will do it. It brings risk of ovarian cancer from 40% to about 1 or 2%.
Today I get my BMX and implants. All ready to go.
0 -
Mareluna, I hope all goes well with your surgery today! keep us posted.
0 -
GLUTAMINE dosage for prevention of neuropathy
After one dose dense taxol treatment I already have numbness in my finger tips and it's been 9 days now.
Yesterday I spoke to a registered dieticians who works with cancer patients in a cluster of hospitals in my area.
She said that the amount of Glutamine needed to potentially prevent neuropathy from taxol is: 2 tsps pure L-Glutamine (she says GNC brand is economical) 3 times a day. Since it is gritty most people mix it in apple sauce or some other food.
I told her I had capsules and she said with the micrograms indicated I would need to swallow 14 capsules 3 times a day.
So it's off to GNC I go to try to stop the spread of neuropathy before the next taxol treatment.0 -
Politicomama~Thanks for the info. The thought of extra steroids along with Benadryl sounds really scary to me. Like am I going to be up & down at the same time?
I wasn't nervous at all starting chemo, but I am nervous about the pre-meds for the first 2 taxol.
I have my last AC this Friday. I'm going to talk to them then about making preparations for taxol.
Blessings
Paula0 -
i like the benydryl... relaxes me
my best days of the week r treatment days and theday after
0 -
soteria - I totally understand your concern about the taxol and all the premeds that are given to avoid the allergic reaction. But since I did have a reaction after my 2nd taxol even with the premeds - I would think that they are absolutely essential. The worst part for me was having to have 100mgms of hydrocortisone and more benadryl in addition to the 50 mgm of dexamethasone and 50 mgms of benadryl. I wonder just how much a body can take?
I have read on here from many women that taxol is so much easier than AC but for me it is way worse - I absolutely hate it. So much pain in the muscles and joints and just generally feeling crappy. Already dreading the next one!!
0 -
Peggy - I take glutamine - it is a large dose - I believe it is 20 grams per day. I mix it in a bottle in the morning and just drink it throughout the day. Yes you do have to buy the powder - it is quite tolerable to drink. I did buy the capsules also and realized I'd have to consume so many of them to get the right dose. I also take Vit B6 and a B complex - and today I am going to get B12 and add that to the arsenal. I want to avoid the neuropathy if at all possible. I also have acupuncture weekly which my MO said can help. So far I have slight numbness in the fingers (less than the 1st treatment though) so I am hoping they stay like that. I also take L-acetyl carnitine which is supposed to help neuropathy.
0 -
Paula, I think one way you could look at it that it is less steriods overall. They give you the iv dose, and then no more. Just in case they forget there is bum burning with those iv riods! They can slow it down and dilute it to lessen that. Nothing to take at home. I haven't had the emotional issues with the taxol steriods like I did the AC steriods.
Adagio, they give premeds during the first two, and stay with you. If you have no reaction then on number 3 no premeds and they stay with you. OSU seems to be one of the few places doing this. She had a giant box with needles full of benadryl, and epi pen, and steriods in the room with her, and left in there until my drip was done.
Mareluna, best wishes with your sugery today!
0 -
First Taxol/Herceptin done. First of any treatment. I am feeling fine. Other than random short pain in my teeth, which I wouldn't have associated with a SE had i not read it on this thread, I would say I'm SE free.... for now. This may change drastically tomorrow. Maybe it is the steroids... and other pre meds I should me thanking ... til tomorrow.
0 -
poliico,
I did #10 of 12 taxol/herceptin yesterday. My MO cut the decadron dosage in half and 50 mgs. of benadryl. I was able to sleep, not feeling speedy today. I took one extra-strength tylenol yesterday for aches. You girls can always ask the MO to adjust the pre-meds.
0 -
macho-mouse, hooray for getting through treatment #1! For me the anticipation was the worst, and it got easier as the weeks went by. And believe it or not, the weeks went by quickly. Hope your SE's continue to be minimal.
0
