After what was seen as excellent results after first MRI on Cape, 2nd MRI not so dandy! It worked very well on mets in my liver mets and no mention of femur but there has been unwanted activity “progression of the right interpectoral lyphadenopathy and other chest wall disease”. .
My onc called me in immediately to discuss (24hrs to be precise) I was devastated as she began to tell me she wants me to go onto IV Taxol - weekly infusion, getting a port, losing my hair…. I was speechless, I’ve never had IV chemo before.
As I mentioned Onc wants me to have taxol, and because I asked for another option of a chemo pill I was also given info about Navelbine.
Can anyone give me their thoughts/experience on either - I’m scared that I’ll never get off taxol until it stops working- which means I’ll be bald indefinitely, small price to pay for health I know but still, if I can put that s/e off a bit longer I’d like to! Thanks in advance & a happy new year to you all
Nx
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Ntash01
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We have all been there. I was were you are now, just weeks ago. ap did not work and I was on it for 8 darn months and the tm's kept rising, still now at around 464, from 80 in April. Doc wanted to also put me on taxol and gave me the option of oral chemo vinorelbine and I stated yes, as he said we still have SOME time. However, if within a few months or so of taking it and it does not lower my markers, hence not working, I am not going to fart around with this and will go ahead with the iv chemo. It will be my second time. Had it in 2016 after initial dx. This is just my thoughts dear. Blessings and all the support for whatever you decide. we are all here for you.
I too will ask if I can give it ago, if early indication show movement in the wrong direction- then IV. At least I would have gotten my head around it all.
How are you finding Navelbine, how are you having it/schedule?
Actually, navelbine was the brand name and I do not think it is being manufactured. Vinoralbine is the generic. Took the first 3 pills (90) mgs on the 20th and the next dose on the 27th. No issues at all. Maybe a bit of constipation, but eating all this holiday stuff could be he issue too. I use essential oils for pain and cannabis tintures and oil too. Not on any prescription drugs for pain. Actually they gave me nausa meds and was told to take 15 min prior, but I did not need them. Took the pills after dinner. Hope this helps
I can understand your reluctance to have IV chemo. I think IV chemo strikes the fear in many of us. I remember my medical oncologist telling me two years ago that he wanted to go on IV chemo. Luckily my OncoType test revealed that my type of tumor would not benefit from IV chemo. So, I understand your fear/concern with IV chemo. I know that you will make the best decision for your case.
I have been on taxol. I did lose my hair but the rest was not too bad. I had envisioned feeling very bad and vomiting. I had mild nausea- never threw up. I did have chemo fog. Totally understand the desire to push off that side effect. When I started I knew it was for 12 weeks, then I would be done. I agree it is much harder with no end date. Sending prayers, strength, hope, … whatever the universe will let me send through this forum.
You hit the nail on the head… no end date! Too much to deal with in that moment- now I know it’s next after Vinorelbin, I’m more prepared and can and will deal with it. Not to mention hospital for infusion every week - it was just all overwhelming.
I agree, I do not want to do the iv chemo again, but I do not want to leave this planet yet either. We are all just hoping for the panacea - the new erso will be spoken about during the first week of the jp morgan cancer conference. Blessings
I was in the same position and started Navelbine about 3 months ago.. 2 weeks on and one week off. I will have a CT on 5th Jan to see if it is working.. Some constipation, I look yellow and am tired, but my red and white bloods are fine (for someone on chemo). I will update. I told my oncologist that I did not think I had the reserves to take on iv chemo at this time (lost a lot of weight) It is the law of diminishing returns once you start IV chemo. He did say that if 10 people were given chemo, one or two would benefit.. so that is worth considering.. Do you feel lucky??! I am hoping this current treatment works for a while. In the UK Navelbine is usually given after IV chemo has stopped working, it is tolerated less well if you have been worn down with IV... so worth trying first in my opinion.
It’s been a tough couple of weeks but luckily I got through it with all your messages x I so needed that! Thank you, thank you xxx
I will be starting Vinorelbine (Navelbine) Monday or Tuesday, just waiting for OK after bloods yesterday. Hoping side effects are manageable and I can carry on as before.
I’m happy to have put off IV at least for the next three months but if it’s to be my new protocol….. I’ll be ready for it. Just hoping Vino agrees with me a little longer than Cape. BTW… Cape worked excellent on my liver but not on nodes in clavicle that grew from 3 cm to 3.8 since last scan.
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Questions on Taxol
Taxol IV chemo date set.
3rd weekly Taxol update.
