Weekly Taxol for Stage 4
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me too, thanks lisajo6! Is the reduction helping you to sleep? Have you tried melatonin?
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I couldn't sleep at all with the steroids so was gradually dropped down. I felt much better without them. However the Dex does help with nausea etc so you might have to up any anti nausea meds. I have always had a tricky stomach with taxol possibly it was worse without the Dex. I was just happy to be able to sleep again.
Of course now I'm on the oral taxol and there are no premeds to worry about. My stomach still gets a bit unsettled but not nearly as bad.
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thank you shazzakelly! I wanted off the steroid, thanks for the advice I will talk with my onc. About upping the pepsid after my week off!
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I have just started round three of weekly taxol. I am having a lot of acid reflux. I have to make myself vomit, (sorry). Then sometimes I will be shaky for a while and then it will pass. I am always tired....is this normal? I still have no pain and will get my markers checked in two weeks. I have a lovely array of white, gray, brown hair growing in!
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My first post here. 5 yrs ago had intensive chemo for BC then only a lumpectomy after chemo worked so well. Tried 3-4 hormone therapies and I tolerated none of them, so took no action after that. This past April 2016 my right neck, arm and face were all swollen and discovered lymph nodes full of cancer and lots of bone mets. Friday I have # 15 of 18 taxol treatments. PET scan last month showed incredible improvement, so clearly I respond well to chemo. My wonderful doc tells me I will most likely need to be on some form of chemo forever. I have handled taxol really well, just tired and a bit dizzy and really tired...until the last couple of weeks -- bad pain my hips and hindquarters. So, I am starting to wonder/worry about what it next. I see many of you have been on taxol for a long time. Do they reduce the dose if you get it for so long?
I am 69, but have more cruises and road trips to do! More books to read, more weaving and spinning to do!!!!!
Just as a side note - I was a clinical social worker, worked for several years as a hospice social worker!
Thanks for listening! Pamela
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Welcome Artiecat. I've been on Taxol for 3 years now. I did at some stage have my dose dropped to help with SEs but I think over time your body just adjusts to always having it and it does get easier. I'm on the oral version now which seems easier to tolerate than they IV. My Onc will keep me on taxol till it stops working.
If you are responding well to Taxol why will you stop it after 18. When we have to be in treatment for life the longer we can stay on anyone treatment the better.
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Thanks ShazzaKelly! What you say makes sense. And, I have doc appt on Friday when we will be discussing this, so this food for thought is appreciated. He has mentioned the oral version. And, you are correct, the bad stuff has responded well to the taxol!
I live in Palm Springs (CA) but go to San Diego for tx.
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I'm in New Zealand. We have a completely different system over here in that it's a public health system so we don't have to pay for care. That's fantastic in one sence but coupled with the fact that it's a tiny country we can't afford all the different cancer drugs that are available in the USA. With limited treatment options getting the most out of what we do have is important.
I can highly recommend the oral if it's an option for you. I'm getting it here as part of a trial.
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Hello!
I have been reading over your story Shazza over the past few days, giving me hope, as I begin my own indefinite weekly taxol treatment, with the heartbreaking findings of progression to my liver at my 8 weeks scans, after being stable for 14 months on zolidex, tamoxifen and the trial drug LEE011.
You seem to be the longest traveller I can find, searching for hope and any information you can offer, may I ask where your mets are?
I have 8 and 16 year old daughters, along with an amazing husband, I am devastated and heartbroken to think this is the beginning of the end and what it will be like managing weekly chemo.
After a double mastectomy in 2008, I had four rounds of Taxol every three weeks, after four rounds of AC, radiation, followed by tamoxifen and zolidex for 7 years, until extensive bone mets presented in my ribs, spine, pelvis and hips in July 2015. ER+ / PR+ / HER2-
Look forward to hearing from you
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Hi Emily-Louise. Sorry to hear about your progression. I have been very lucky that weekly taxol has worked for me for so long. Three years in fact. The last 10 months on the oral version Oraxol. Currently a trial drug. I see you are in Australia. I'm pretty sure the trial is available there and maybe worth you looking into. I have certainly found it easier and some of the results coming out suggest it is more effective than the IV.
I was first diagnosed in 1999 then had a recurrence in 2007 in 2013 I was diagnosed with a new cancer on my other side which had already spread. Up until then I had been on tamoxifen for much of the time. At stage 4 diagnosis I had extensive lung and bone mets, most of my internal lymph nodes were affected and I had mets to my kidneys and thyroid.
Taxol was very effective pretty quickly especially with my lungs. Apart from a small amount of active bone stuff at the moment there is no sign of cancer anywhere else.
Weekly taxol is pretty well tolerated by most people. The biggest issue is usually neuropathy which I'm not really able to talk about as I've never had it. According to my Onc this makes me some sort of medical freak/marvel.
I'm still working 30 hours a week and have been training for a 21k cancer walk so life is pretty normal really despite being on chemo all the time.
Good luck. I hope you get the results that I have on it. Feel free to ask any questions you might have.
Shazza
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Shazza,
Your response certainly has given me hope, thank you for sharing
Considering your widespread mets, what a great success story, are you on the Taxol/Carbo combination? Do you have cancer pain? When on the IV were you still able to work the same hours? What were you main side effects? if you were to reach NED would you return to hormone treatment?
Pending brca results, Prof Chan has signed me up for a trial with a gene specific target drug/placebo in conjunction with weekly IV Taxol/Carbo, as exciting as the trial prospect is for the future of cancer treatment, carrying the gene would send me into a world of panic, having two daughters of my own.
If I do not carry the gene, the combination of weekly Taxol/Carbo would be the same treatment plan.
Port going in in Wednesday, chemo next Monday..... Our hearts are heavy and full of fear, I need to find my strength within once again and focus on forward, my goodness it's hard.
Thanks again for sharing, it is what can get you through these dark times....
Emily-Louise
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Emily-Louise. I am doing Taxol only so not sure if the SEs are different when carbo is added. I lost all my hair initially so be prepared for that. It began growing again pretty quickly but it was still quite sometime before it was back to its usual thickness. Mine also came back white.
I would say for myself the greatest SE was initially fatigue but I think in the end my body just got used to it. I found that the premeds they give you to avoid an allergic reaction were my biggest problem but my oncologist was happy to reduce several of those and change a couple and that helped. Issues with nails are common and I kept mine painted a dark colour which for some reason is meant to help. Several of my toe nails lifted and got quite revolting in my first year. I had a dose drop after 12 months of 20% as I was feeling so exhausted and never looked back after that.
Neuropathy is probably the biggest and most common side effect of Taxol and the reason why many have to stop it. For some reason I have never had it so I'm not really able to advise you on this one.
Good luck with your port placement tomorrow. I wouldn't be without mine. After over 100 chemo infusions I doubt my veins would have coped.
Shazza
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Shazza-
To cut or not to cut? My hair appears to be growing back white too...so crazy I am normally strawberry blond. Anywho...I have trimmed my little longer hairs a few times...if I don't will it grow back a little normally, length wise? Do you have hair, if you don't mind me asking??!!
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Hello everyone! I have been quietly reading your experiences with Taxol on this thread and I have found it very encouraging. In particular, I would like to thank Shazzakelly for sharing your story...your words filled me with hope.
I began my Taxol journey at the beginning of September with a cycle of 3 weeks and one week off. After three years of managing my bone mets with many of the treatments mentioned by all of you, I had progression to the liver and some lymph nodes. So, it was IV chemo time again.
I saw my oncologist two days ago and honestly...I did not know what to expect...except that overall, I had been feeling a bit better. The news was that my TM's were down 50%
and my liver enzymes were back to normal. I was a bit shocked! I have not been on any treatment that worked so effectively...except for radiation to my bone mets.
My hair started to fall out on week three but I am not totally bald..just extreme thinness. I have always had short hair and prior to,treatment I cut it very short....still...it is hard to watch your hair fall out...so I got a short hair wig. My kids thought I had my hair done and even my treatment nurse did not clue in! So, hello wig! I just have to keep it away from our family Ginger tabby cat! He will pounce on it!
I started on my second cycle, treatment 4 a few days ago and I did not get any Decadron. Slept so much better! I crash on day two post treatment and sleep a great deal...my stomach is a bit unsettled so I am eating simple small meals every two hours and taking Gravol. At night, I am taking Melatonin 20mg. It seems to help!
I will share my jourmey as I travel on this road with all of you....
Thank you for sharing and for listening.
" I understood that I owed it to myself, to everyone I met, and to life itself to always be an expression of my own unique essence" Anita Moorjani
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nrsteph I do have hair. trying to find a picture to post. It's hard to remember back to when I first started but I wore a wig for a while as I looked like all my male relatives over 50 with my receding hairline and my bald spot on top.
I kept it very very short till it grew in a bit better. In fact it's still very short but that's because I just don't think I could cope with growing it to have it all come out again if I change treatment.
Since I have been on the oral taxol it has thickened up a lot. It's still white though so I have it dyed a steel grey colour. I get it cut every 5 weeks but I know I went a lot longer than that on IV taxol.
My eyebrows hung in for a long time but once they went they never really grew back. My eye lashes come and go.
Here we go I finally found a picture. Try not to laugh too much.
Have a great week everyone
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Thanks for the picture Shazz!!! Great, until your post I really just assumed I would be bald while undergoing treatment which at stage IV meant FOREVER (to quote in slow motion from Sandlot)!!!! Now I will let the white hair grow!! Woo Hoo! I haven't gotten a wig yet and continue to go outside without a head covering because I don't want my kiddos to think that there is anything wrong with having a bald head and think that I have to cover myself to have interactions with our community! But the idea of having my own back sends me over the moon. My next scan is end of October and if taxol is still working I am going to ask about the oral version as I think you said may work better than the IV version. My nails lifted but the new nail growth seems just fine....thanks so much for staying engaged on this board it really means so very much to me!
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Shazza
I popped in becasue my onc mentioned weekly Taxol may be next once Doxil and Cytoxan are no longer working. I'm so happy to hear about how successful and easy it's been for you. Weekly taxol sounded scary before. Based on absolutely nothing of course.
:-)
Lisa
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Help! Starting my 5 round of weekly taxol. A month ago my markers were down to 80. Today my results were 82.5. I have not had a pet scan for four months. I feel fine and have no pain-except for slight neuropathy in my feet, my nails are turning brown and the nail beds hurt. I only have bone mets....but maybe it has gone to an organ. All my blood work was fine. I am scared. Has this happened to anyone. Please respond!
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Lisajo tumour markers don't work for me so we have stopped doing them so I don't have any personal experience to draw on. However from what I have read tumour markers can rise for reasons other than cancer and also tumour die off can cause them to rise as well.
I think that your Onc would wait to see if there was a upward trend before doing anything. Which tumour marker test do you have done? I know 2 points in the CA125 I used to have wasn't considered significant.
Hoping someone with more knowledge can pipe in soon
Try not to panic too much. Yes I know. Easier said than done
Shazza
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lisajo- neither of my onc use tumor markers so I am sorry I can't help there. My nailbeds hurt during the initial lifting but stopped hurting after a week or two and now if I keep them short and don't bump them hard they grow out and haven't lifted anymore. However I ran into a chair leg and that lifted my toe nail violently and I can still see the blood at the base but after a day or two it doesn't hurt anymore.
After 10 taxol infusions my PET was clear. A month ago on my week off from chemo my right breast (the culprit) began to swell, the lump got fuller, my areola was swollen. The next week I had my regular appt. onc. Ordered mammo and ultrasound. ..onc and radiologist said mass compressed and tomors don't compress...I felt better so I opted to wait two weeks for my scheduled PET..the PET was yesterday...taxol stopped working for me after 4 months...I had hoped to be like Shazz because I tolerated taxol sooooo well. I am going to go on doxil next. I feel broken and don't know what to do...anyone know anything about doxil? Boards to point me to? Anything? I will check in on this board in hopes of keeping in touch with you ladies especially you shazz!!!
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I'm so sorry to hear Taxol has stopped working for you Nrsteph. Good luck with doxil im keeping my fingers crossed you get a good SE free run on it. Keep us posted
Shazz xx
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Very quiet here at the moment. Hope everyone is doing ok. I'm still on the oral taxol trial and certainly find it easier than the IV. I'm hoping to get a break of the few weeks over the Xmas/New year period as starting to feel a bit fatigued. My Onc had ordered scans and we will see what they look like first.
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Hi all,
So I had a pet scan in November and all my bone mets were resolved and my two lymph nodes were partially resolved. My ca27.29 was 69. I was happy. 3 weeks later my markers are111! I do not get it. My onc said we will stay the course with taxol and retest markers in 4 weeks. I am so bumbed. All my organs were clear. Any advice or thoughts?
Lisa S.
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Is this thread still active? I start weekly Taxol tomorrow, and I'm searching for a current thread in Stage IV.
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Hi all,
I will be starting Taxol on Friday but the plan is to go with treatments every three weeks (as long as the neuropathy does not appear). Is there a difference in terms of SEs?
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I have been on weekly taxol since July. It has been doable, but I definitely have had SEs. My nails have hurt and raised, very tired, feel out of breath, weak legs and arms and hair loss. Although now my hair is growing back, I don't understand that.
I am very disappointed that this thread has no been active for a long time. I need it!
The first time I had taxol was in 1998. I had it every three weeks. My side effects were tightness in my chest, flushed face and chest. nueropathy, fatigue and almost a feeling of being "outside my body."
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I did weekly taxol in 2014 and would be happy to answer questions.
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I started Taxol today. Will repeat next Thursday and the next, and then have the fourth week off. I requested that my chemo days be moved to Monday after that break, so by March I'll be infusing on Monday.
Ever since my METS dx in 2010, I have always been involved in threads where there was good "shoptalk" and support for whatever med I was on at the time, and I love that. It has been immeasurably helpful to me all these years.
I think we Stage IV Taxol gals surely cannot be so few! I bet there are others on the boards who take weekly Taxol for MBC? Let's just start talking and maybe that will help keep the thread atop the Active Topics area for a bit, where people will see it.
I am in a clinical trial where I did not randomize to receive the newer drug paired with it. I really wanted to take the new drug, too, BUT... I'm trusting God about that. You know, it could be that it would have trainwrecked some of my other problems -- sludgy gallbladder, history of liver failures and pancreatitis, MTHFR-- who knows? I can't do anything about how it randomized me, so I am not going to worry about it.
How soon might I need to make a change with my hair?
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I found a note I scribbled on the back of my first (alarming) PET/CT report. It says, "Three to four weeks of hair left." I believe it was the day of my third infusion that I got up from the chair and ran a brush through my long hair and a lot of hair came out. I got a short cut later that week and enjoyed it for a couple weeks. It was nice to see that I would look good with short hair when it came back. I didn't shave it, just let it happen and used a lint roller on my pillow.
I like the way you are looking at the trial, lulubee. Taxol alone is a good treatment.
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thanks, Shetland.
My primary goal in losing the hair is making it easy on my 2yo granddaughter. We are super close-- mutual fan club of cosmic devotion sparkles here-- AND she has a thing for hair. She uses my hair and her mom's to comfort and soothe herself. "Please let me have your hair?"-- if we have it pulled back. Remember the old song called Sarah Maria that James Taylor wrote for his little daughter? "One hand in her hair, and one hand in her mouth." That's my baby girl, when she gets in my lap and asks for a "Mimi snuggle." With her, it's two middle fingers in the mouth, the other hand in MY hair. And yes, she pulls a bit. ***If it comes out in her hand here in a few days, we are talking serious trauma.***
So Yeah. I need a strategy. In the name of love.
I would probably just be a scarf and turban gal if it weren't for her, but no, I'll have to get a wig to make this easier (and for my 17 son, too) and a sneaky good wig at that. I have a ton of super thick hair. Like... back when I wore ponytails they were over 2" diameter at the elastic.
I'm thinking I should probably get my hair cut short soon and go ahead and buy a wig that looks more like it does now, start wearing that when she's here, but then for my own convenience it will be short when it starts falling out. I mean... it's just so thick, it will be everywhere!!
I dunno. Sigh. Help.
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