Could you give me some idea of what I... - SHARE Metastatic ...

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Could you give me some idea of what I will go through please?

16 Replies

Hi everyone. Had my scan results today and tumors are still growing. Oncologist said I have been on many therapies and none have worked . Now my last option is chemo. Paclitaxel sometimes called Taxol. I am very old but as she said I am active so we can try this. I have heard so many frightening reports of chemo that I am living in fear of feeling so ill. Do any of you dear friends have any experience of this treatment please? I could do with a bit of support now, Thank you so much. 😊

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16 Replies
Winner123 profile image
Winner123

Hi Firebird. My wife was on Paclitaxol, it really wasn't that bad! Taxol is a class of chemo drugs, there are a few in the same family. It's normally delivered weekly via IV. It can (but doesn't always) cause hair loss so my wife had a cold cap, she didn't suffer any hair loss but she was not on it for long (taxols don't seem to work for her triple negative breast cancer). My I ask what exact cancer you have? If this is the first chemo you have had, there should be a good few you can try to keep it at bay? I know my wife is currently responding to Capecitabine better than she did taxols. Everyone is different and cancers seem to follow no hard and fast rules, they respond to different things for different people. Please don't be scared, we were scared and tried to fight chemo for 6-8 months but we needed it and my wife is responding really well to chemo now. Do have a good chat to your Oncologist about different treatments, what lines are available and find one that works for you. You may need to roll through a few to find one that works, hopefully for a long time. Ask to investigate lower doses (you said you were older and I'd never be as rude as to ask!) But there is a lot written about lower dose chemo being as effective with less toxicity. If you don't have a copy of Anne's book, please get it now, it's an absolutely vital reference and has helped me so much.

amazon.co.uk/dp/B07NJ8GZ7M/...

Good luck with your journey, don't be scared, you have support here and at home I'm sure. XXX ♥️

I am sorry to hear of your worry and am afraid I can’t offer any advice on Taxol myself, but I know that many ladies here are on Taxol and have tolerated it very well. I am sure you will be hearing from them soon. I wish you all the best with your next treatment.Clare

Thatflowerlady profile image
Thatflowerlady

Hi Firebird10 I finished Paclitaxel May 2021 . It was not as harsh as I feared . I had IV chemo at initial diagnosis 18 years ago so I had an idea of what it would be like .

I did loose my hair but it has since grown back .

I took anti nausea pills on occasion.

I did have a port installed for the IV

If you have any questions ask away .

I actually felt better on Paclitaxel than I when I was on Ibrance and had progression to my liver.

Luann

Cureforever profile image
Cureforever in reply to Thatflowerlady

Hi, you mentioned that you finished chemo. What was your next step? I am always scared that if you start I’ve chemo there is no other option. Even though my oncologist said that you may go back on targeted and hormonal therapy that stopped working before or drugs from those groups. Is it your case? Please share. Of course I am waiting on ErSO progression to human trials that showed to be a cure on animals. I try to stay hopeful. Thank you

Best,

Marina

Thatflowerlady profile image
Thatflowerlady in reply to Cureforever

Hi Marina I had 12 treatments of Paclitaxel every 2 weeks & perjeta & heceptin every 3 weeks . I continue to have perjeta & herceptin IV a every 3 weeks, denosumab once a month and have started oral Exemestane daily . All seems tolerable, I go for scans January/ February so i will know how effective it has been . I did have scans in sept and they showed shrinkage in the liver Mets & stable bone & lung Mets .

My oncologist did mention about tamoxifen being re introduced as my body has not had it for 15 years . I am assuming if the Exemestane doesn’t work or causes too may side effects . So far I have been on Anastrozole, fulvestrant, tamoxifen & letrozole estrogen blockers .

The next appointment I have I should be asking what future treatments may be possible for me . I have phone appointments with the oncologist but my last in person appointment with her was about 1 year ago. A few weeks ago i had an in person appointment to be with the oncologist but it turned out to be with her physician so I will wait to ask when oncologist calls .

I hope this info helps a little

Luann

Cureforever profile image
Cureforever in reply to Thatflowerlady

Hi Luann Thank you for your very detailed response. I hope your treatment will work for you. I can guess that you are HER-2 positive if you are on herceptin and perjeta now. This treatment helps many people and they stay long on it.

Hope new treatments come along that we may avoid IV chemo many people (including myself) are scared of. I am getting a chemo pill now and it’s my fifth or six line of treatment over two years. Thus, I hope it will work.

Good luck,

Marina

Thatflowerlady profile image
Thatflowerlady in reply to Cureforever

I hope the oral medication continues to work for you Marina . But the paxitaxel for some of us has not been that bad . Yes my cancer was HER negative but switched to positive .

All the best .

Cureforever profile image
Cureforever in reply to Thatflowerlady

Thank you Luann for your positivity and nice words. I hope ErSO will come around and become a cure for all of us. Best,

Marina

LDR1 profile image
LDR1

I had Taxol as part of my chemo regimen when I first got cancer 6 years ago. The regimen started with Adriamycin (“the red devil”) so by contrast Taxol seemed milder. It can effect your fingernails and toenails, and in some people causes foot problems. Both these happened to me so I had to wear comfy slipper-like shoes to work, and my toenails gradually fell off with new ones grown in underneath. I also felt some emotional effects though that may have been related to the anti-nausea steroids they gave me during treatment. All in all it was bearable, and it was quite effective at shrinking my tumors. Wishing you strength and resilience as you go through this next phase! 🙏🏼

TammyCross profile image
TammyCross

Funny -- I know two older women (late 80's -- older than I am) with mbc, diagnosed around the same time I was, who tried the same treatments I did, an aromatase inhibitor and Ibrance, and they didn't work for them. I am wondering if there is a correlation, but shouldn't generalize from a sample of two, or now 3. One of them is on chemo and finds it pretty easy. She lost her hair but wears a nice cap. What bothers her most is neurasthenia in her hands. What is great, though, is that this is working and she is charging around, taking long walks, back to her old self.

jersey-jazz profile image
jersey-jazz

How old is very old? Please let me know because I have a purple forelock, a boyfriend and a nifty little motorhome which I drive away in. I am eighty-four.

in reply to jersey-jazz

Like your style jersey-jazz

jersey-jazz profile image
jersey-jazz in reply to

Thank you!

jersey-jazz profile image
jersey-jazz

The taxol worked for me way back in 2015 when I was stage two or three or, as it turns out, de novo. I was initially put on so may drugs and after a while, was declared "cancer free". It was what it was, an invasion in my body. It did, however, fix the problem, then. It is the old method of putting one foot in front of the other and putting a smile on your face. We've got this! So, How old is old in your case?

blms profile image
blms

I am 71 and almost 72. I have been on reduced dosage taxol since March 2021. Originally, the infusion was 3 weeks on and one off. Now I am on 2 weeks on and one off. I have no problem with taxol. My infusions are early on Mondays and and quite simple with the port installation. I began recently to have some, not much, neuropathy in my feet. I recently began taking homeopathic nerve pain pellets and they seem to be amazing as I have not noticed any for the past week. Now, I will know more in the next couple of weeks to determine if this is actually the case. I was petrified before I had my first treatment as I remembered my original taxol, stronger dose, 24 years ago--that was not pleasant. This is great and I have had a very good response to date with shrinking all cancer areas.

jersey-jazz profile image
jersey-jazz

Good on you! We have got a great cheerleading squad on this august forum. We are all wonderful support for one another. Long may it last and long may we last!!!

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