Weekly Taxol group
Comments
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I'm 3 weeks PFC and exercise tolerance is much better, a good restorative yoga teacher takes into account whatever your disability is, from mastectomy arm issues to back issues, wrist sprains or ankle issues. Try to go early the first time so you can have a private moment to discuss your issues with the instructor before the class.
I went to a restorative yoga class last week and really appreciated doing things ( gently) that I don't do on my own at home. The instructor checked in with me and others for various poses.0 -
Nkb: That's great advice. Frankly, I waited this long to even think about any type of yoga because I had very little strength in my arms or legs. So now that I can actually get up from the floor by myself, with a little work, I might be up for yoga.
Susan
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Hello Ladies
I must say I LOVE this site! It's wonderful to learn about different experiences that women have on the same chemo. So much good advice and encouragement from people who have been where I am and still dealing with it. It's very hard for people who never experienced this to understand.
I plan to weigh myself about 2 weeks after I'm finished with Taxol before my double mastectomy in October. I know I have lots inches by the way my clothes fit but like most people I want to see the scale drop too.0 -
hello my wonderfull ladies, I am just 1 week out of taxol/herceptin, but I'll continue with herceptin 1 year..........
I'm wondering if somebody have the herceptin also in treatment( ladies with Her+)....just I wanted to know if herceptin alone gave you some side effects comparing to taxol/herceptin. are you less tired?
thanks
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I am finally done with the 12 Taxols with Herceptin. I had BMX and Diep first followed by AC. Taxol was very hard on me as I needed two transfusions and I was very tired. Otherwise the SE were not too bad.
Sissdyi- thanks for starting this thread.
Jpmom, Gritgirl, and ladyfighter - was great to get advice from you guys.
Everyone else going through this- this is doable hang in there.
Ok now that I won't be putting anymore chemo in my body my hair better start growing. There is nothing there yet
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Hello everyone!
First taxol infusion yesterday. The premeds were loopy but overall I have to say it , so far, seems much easier than AC.
One down, 11 to go then onto rads. Have a great day all.
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Ashley, I think Herceptin is a lot easier as far as side effects; but I'm also wonder as we go along, will the fatigue be cumulative with it as well?
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The effects have been cumulative for me. I just had #8. I'm pretty tired and on some days the muscle/bone pain is nasty. Overall, I'd take it any day over AC.
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hello Sissydi, I don't know about fatigue.I am already tired after 12taxol/herceptin........just I'am wondering about hart EF ..if it drops we have to stop? mine was 67%, after that 58%( 3 months ago) and now 49%...I will do tomorrow the next infusion, they'll check me again in 2 weeks . it is possible to go up in 2 weeks? ........I want this herceptin......
thanks for your infos/help
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Ashley, you are on herceptin? I see that you are her2 negative?
I felt so tired for 3 days after 1st herceptin. My vertigo comes and goes I now wonder if it is from herceptin not taxol when I first started taxol/herceptin back in may??
Sissydi, there should be a section for targeted therapy thread because it is not chemo or radiation, right?
I wonder if taking b6 helped me having no pains during taxol, did you guys tried that? Or maybe my anti anxiety med Effexor (for over 7 years) helped that as well?
For new comers, taxol is a breeze compared to nasty AC!!! =]
Meeting radiologist tomorrow at 8:30am can't wait and nervous !
Hugs!!!0 -
ladyfighter,
I am HER 2+, (low HER) but I am in a clinical trial about this, and I receive herceptin( herceptin arm). I did already 12 weekly H with taxol, I was exhausted after the #8,day3,4 and 5 , finished the taxol last week and I am still exhausted.......tomorrow ,I'll see , will be my first herceptin alone. but after 4AC before, I think it is normal to be tired; I didn't have strong SE until now, just low neuthrophiles on TH or very low on AC ( needed neupogen). taxol was easy ,I can say, comparing AC for sure. I'll have the radiotherapy in October - #33
good luck and have a nice evening
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Ladyfighter- After 4 DD AC, I started my weekly Taxol treatments today. I just wanted to say how much I have enjoyed reading your posts. It's obvious how much you care about the newcomers--thanks for taking the time to post the great info- it helped me a bunch...congrats on being PFC and good luck at the radiologist!0
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Lady fighter, let us know how your appt. goes!
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Hi everyone.
Had my first taxol/herceptin yesterday. Going in I was feeling that nervous nausea you can get when you're about ready to give a speech, and then of corse didn't eat or drink much. My onc could tell (geez) so I got a little lecture that I didn't drink enough water and I was slightly anemic, may WBC were good. Yay!!
They first gave me a steroid and 50 mg of Benadryl through my IV. I will say the Benadryl was the worst part. Although I didn't get any reaction during infusion from the taxol, my left leg got that really tired feeling from the Benadryl and I couldln't get comfortable. I did sleep off and on but I'm remembering why I don't like Benadryl. My head felt so apart from my whole body. Anyway, After all was done I was kept for an additional half hour for observation, but I'm not sure if it is because of the taxol or herceptin. They just spent the time giving me additional hydration through my IV. I was so ready to leave that right on the dot I rang my bell to leave. We had to go get our boys from after school care and I was so ready to leave. I will say there is absolutely no way I will be able to drive myself home, too woozy.
So I just woke up and I'm feeling really good so far. I did take some Ativan last night to make sure I slept through the night because of the steroids from yesterday.
Tomorrow I'll post how that went. My onc insisted I shouldn't have any side effects which will be great. I'm keeping my fingers crossed.
Take care and wishing luck to everyone in the BGC this week and no/minimal side effects for all.0 -
I had my fifth taxol on Thursday. Still no side effects. I am still taking the L-Carnitine, L-Lysine and L-Glutamine and hopefully it will help keep me from having any neuropathy. They did adjust my benadryl to 25 mg instead of fifty. Now I can make it home and manage to stay awake for an hour before falling asleep.
My hair still isn't growing hopefully it will start to come in soon. I live in Arizona and it has been extremely hot this summer. I wear a wig or hat to work and take them off immediately when I get home. So hopefully it will cool off soon.
My infusion nurse told me that I should be the poster child for chemo!!! She can't believe how well I have tolerated chemo and says I look fantastic. I feel very blessed and I thank God daily!!!
Hope everyone has a great week with no side effects.
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Lola, how wonderful!
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Just completed Taxol 8 at 11am today
My hair seems to be growing- but my RN said don't get to used to it
It'll fall out and then the real hair will come in. I was getting comfy brushing the fluff into a direction
More and more bone pain as this goes on- neuropathy is intermittent too.
My RN sais the bone pain for some people has lasted 3-4 months post Taxol. eek.More tired every week. I am working through this where I go into work the next day after taxol- gets ome hours in- but I am hitting walls more and more earlier- my boss lets me leave when I don't feel good but I think it's time to take a personal day. The weeks are getting more and more of an effort to do anything. I've started to need a cane too.
My Taxols on Mondays- means crappy days Wed and Thurs---- *sigh*
4 more to go.
happy to be here.
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MandalaB- Say it isn't so! I'm a week ahead of you with taxol and enjoying my peach fuzz
My treatments are on Tuesday's #9 tomorrow. I have been lucky not to have any major SE. My only issue is increase in hot flashes, had them prior to starting treatment but more frequent now. I think maybe 10 a day instead of 3-4 still very short durations.
I'm still doing my daily walks 4 miles 5-6 days a week now, hope the tired SE some people expenerce I will be lucky enough to skip!0 -
mgdsmc
I'll say it isn't so - well, it wasn't so for me ...
Had 4 DD AC. Buzzed my hair down when it started to thin out. The last little remnants (which were all over my head) did not go until I was into about my third weekly Taxol.
That's when my brows and lashes went.
However ... after two weeks the little soft downy hair started growing in and my lashes popped out. Brows were coming in but slowly.
My hair grew all through Taxol as did lashes and eye brows.
Two weeks after my final Taxol I ran my hand through my hair and came out with a bunch (like it was thinning or I'd been to the hairdresser who got me with thinning shears.) This continued for about a week or so. It got me down in a way that losing it the first time never did. No one had prepared me that it might happen. And it was definitely chemo related.
But it STOPPED and my hair has continued to grow. I never lost it all or looked like I was losing it all.
Last Taxol was 7/11.
This chemo stuff can be so arbitrary ;-)
Here's to you keeping you peach fuzz!
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thanks for insight on the hair!
I'll take what I can get I had the thickest hair- down to my waist. losing it was tough- but whatever- I can restart my Crystal Gayle goal over again- lol.
fuzz or not.
My eyelashes keep coming out and my eyebrows now have gaps- I have fuzzies there too but they're sparse.
My arm hair is the only thing that never fell out. and my leg hair.mgdsmc- I hear ya on the hot flashes- they are more frequent- and annoying. My period FINALLY stopped about 3 weeks ago. I wake up drenched.It's pretty gross. I told my husband pretty soon he'll need swimmies sleeping next to my gushing bald head. lol. I have a bunch a day and they are intense.
Of course I never get a hot flash in the middle of that freezing cold chemo room- I wish. hah hah.
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TAXOL#2 down, infusion had none of the effects as the first and THAT is a good thing. Day 5 was the worst for me, racing heart for 2.5 hours and dizzy.
Onc said the blurred vision was chemo related and he is hoping the racing is due to anxiety. Didn't feel like that but he recommended going to emmerg if it happens again.
My appetite is voracious today.. will have another blueberry protein shake, makes me think I am having a decadent milkshake
Oh and my hair is growing , I did not lose it all on AC, I have that ostrich look. If it stays yay, if not...oh well see ya later!
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I'm going to be starting Taxol on Sept. 7. Finished 4 rounds of AC on Sept. 4. Didn't lose all my hair on AC, but I guess I will be prepared to lose what I have left (as well as my eyebrows) on Taxol. I had lots of acid reflux on AC. I hope I don't have that with Taxol. Makes it hard to swallow and always feels like I have something caught in my throat. I appreciate all the posts here. Thank you to all of you who are sharing your Taxol experience. It really helps me prepare myself mentally for the next step.
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Hi Ladies,
Just found your board, thanks for setting it up!
I have had five of twelve Taxol and have been tired, nose sores and bone pain. I have been dealing fine with it, but tonight two of my toes have been numb for hours, is this the start of neuropathy?
What can I do to prevent...has anyone experienced this?
Thanks for any input...0 -
So I got restless leg syndrome during the Benadryl the first time for Taxol. What they did yesterday is increased the infusuin time from 30 minutes to 45 minutes and it helped a lot. Thank goodness. With my Taxol I get a bag with 50 mg of Benadryl combined with decadron then when that is done they give me a bag go Zantac. I am in and out of sleep but never completely out of it (at least yesterday I wasn't). I was listening to an older man's conversation with another patient and he had such a calming voice I was enjoying his voice. Very interesting since I thought I was only among a few that no linger plan for the future and just live day by day. This man does the same thing but he said it in such an eloquent way. Come to find out he was a Humanities Professor years ago. I can just imagine listening to a voice like that in class. It would have lulled me to sleep every day. Anyway, this Taxol/Herceptin infusion went well except I am now officially anemic. The ONC does not want me to get an transfusion unless my tiredness gets worse (since we're not sure if my tiredness might just not be from running our 2 littles ones to school and activities, helping with their homework and my great idea to volunteer for their schools Parent Club to handle all of the accounting for their fundraisers. So I am being recommended to drink homemade bone marrow beef soup and eat more of my grass fed organic beef we have on hand. I'll do anything except eat liver to get this rbc counts up. Unfortunately I'm finding it hard to find beef bones to make soup. Our local butchers carry it around winter time, just not right now.
Sor right now I take Alpa Lupoic Acid, B-6 and L-Glutamine to hopefully ward off any major neuropathy. I met someone yesterday who has had a few Taxol treatments already and her entire left leg hurts, is numb and she has swelling in her feet. She's so sweet about it, but WOW.
Good luck to everyone receiving treatment this week and no/minimal side effects.
Take care.0 -
Grace: Look into Glutamine supplements to manage/prevent neuopathy.
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I love your avatar, whenlifegivesyoulemons....lol.
My numnbness in my fingers is around too-My RN said as long as it doesn't last or affect easy things like zippering or buttoning or not feeling your feet hit the floor, then that's when they have to stop the stuff, at least on my end.
So far it's been ok.
Has anyone had any nausea?
I've been feeling it a little bit since Monday- and this morning I woke up again throwing up terribly and with the worst headache of my life.
I've been down all day and I would say it has to be in the top 3 worst days ever so far since chemo started.
I'm eating, just feeling really queasy every now and then.
ugh.
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Hello Ladies
Well i continue to do my daily 4 miles in the early mornings but now starting to have a couple of issues. My ankles and a couple of lymphnodes by my right leg are swollen. This isnt the first time it happened to me when i start exercising it always happens but usually ignore it. Now that i have BC not so sure its a smart move. I wear knee high ted hose have been since i started taxol in july to help with edema and it works. When im finished walking and elevate my legs the nodes go away and the edema also. It concerns me because as i my legs get smaller the nodes stick out and are noticable. Not sure if its me over reacting since it has been happening for over 10 years but just not sure what to do. Any suggestions would be great!
I did taxol # 9 on tuesday just 3 more to go.
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Mandela B: When I started chemo, very recently, my doc told me there's really no reason why I should have to suffer with nausea. There are lots of drugs out there that can help with that. She told me to take them as soon as symptoms appear. I haven't had to use them, thankfully, but instead I have the early signs of neuropathy. Hope you're on the mend soon.
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Mandela and others- here is my taxol experience for what it's worth. Sounds like it is very variable. I am 4 weeks PFC.
Nose bleeds when blowing nose- went away ~3 weeks PFC.
Muscle tightness ESP in legs, but also forearms and back started about taxol#10 and still continue, I need to stretch often esp in the middle of the night or before I attempt walking downstairs. That is better esp in arms, but, I still feel 100 years old in the stiffness department.
Neuropathy- started with parenthesis in toes and came and went, got worse with certain positions like crossing legs or elevating them on a chair. Started around #4 taxol. I talked to my MO who had just gotten back from the big annual cancer conference about Glutamine, Carnitine and B vits. A big double blind study had just been completed and showed glutamine could be helpful, but Carntine made neuropathy worse in the study. No clear data on B vits- I was told by him to try the glutamine 10 grams 3 times per day, the day before, say of and day after the taxol infusion. Also he told me Not to take Carntine.
My neuropathy continues and is anywhere from not there to all toes numb and front of foot numb. It makes the first few steps when I first get up kind of stumbly. Fingers were mild. Not sure if it is overall better yet, since it is so variable.
Nails- horrible pain and ugly. The pain made putting sox on, opening things, dishes etc. so many things were hard. Getting them wet made it worse. I painted the toe nails and tried not to stub them. The finger nails hurt for about a month, now are better, still ugly. Haven't lost any fingernails, may lose a toenail or two. ( my MO said he had seen far worse)
Hair- started growing back Taxol #2. Grew the whole time on taxol, but, sparcer than normal. Around Taxol #7 it started to shed and I had scalp pain. About 50 hairs per day shed, mostly on top. I had quite a few white and a few brown throughout. It is soft and fun to rub, not pretty, but, way better than the sensitive totally bald head. Hair everywhere else did not grow at all. Eyebrows and lashes left during taxol, came back during taxol and left again after taxol. I see a few returning. I see lots of new growth about 1/16th of an inch in between the longer hairs.
Hope that helps0 -
First taxol completed today. Nurse watched me for about 20 minutes to make sure I didn't have an allergic reaction. I didn't, thank goodness. They gave me magnesium and calcium, before and after the Taxol, which is supposed to help with neuorpathy. It was something that I hadn't heard of before, but maybe someone has mentioned it here. I type a lot at my job, so it would be nice to not get numb fingers!
1 down, 11 more treatments to go.
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