This is me .Hello all.: Hi. I was... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

6,548 members8,104 posts

This is me .Hello all.

9 Replies

Hi. I was diagnosed 2019. 2 tumors in breast. 4 armpit. Cancerous lymph node on clavicle. On letrozole for 13 months then stopped. On aromasin but didn't work. On fulverstant injections but didn't work. Now on Taxol chemo. Side effects not good but worst is messing with my mind and befuddled. My oncologist said if I cannot stand it she will give me a week off. Has anyone else had good results from Taxol please? It is comforting to read about so many brave ladies. Happy to meet you all.

Read more about...
9 Replies
Ursula_I profile image
Ursula_I

Hello Firebird

Good to read you and so sorry you have not had much joy with your treatments.

I was on Aromasin for five years after stage 3 triple positive primary BC, lymph node involvement. Seems the cancer changed when it metastasised and it is now ER-negative so I stopped the aromasin. Extensive secondaries in both soft tissue and bones, which they are currently treating with Docetaxol and Herceptin + Perjeta (still Her2 positive).

Is Taxol the same as Docetaxol?

After three rounds of Docetaxol the mets in my liver, lung and thymus have significantly reduced! (No significant effect on my bones as yet, though 😞.)

The side effects have been awful but in fact I am gradually coping better (had my fourth round last week). The two worst side effects are constipation and skin fragility - my hands are constantly getting tears and sores, and the skin inside my nose just pulls away in chunks - yuck. Loss of taste not nice either, esp with Christmas coming up!

Do you know yet if the Taxol is working? That might give you a mental boost and the strength to cope with the side effects. Or could you explore a different chemo drug?

As for the worrying etc, what is working for me is just to focus on the here and now. I am trying to take a walk every day and seek out tiny moments of joy. I rode on a fairground carousel the other day and felt as free as a child! I really giggled, it was mentally liberating.

I know all our circumstances are different snd I hope you can find inner strength, courage and love from those around you, while getting the best treatment for you. (I'm finding a bit of 'retail therapy' helps me... even just window shopping!)

Love and all the very best

Lucy

in reply to Ursula_I

Hi thanks for your answer. The long name for the chemo is Paclitaxel sometimes called taxol. That's what's other form I signed. So many brave ladies on the site it is encouraging.

PJBinMI profile image
PJBinMI

I'm sorry that you've had such a rough time with this lousy cancer. I've not been on Taxol myself but I'm a long timer with MBC--over 17 years--and have met several women who have done well on Taxol. When I was first in treatment, it was one of two chemos that were used first for those whose cancer was E-., Taxol is one of 3 taxanes that can be used for mbc. Taxotere and Abraxane are the others. Maybe one of those would be easier on you, if they are still used. I haven't heard of anyone being on them for awhile butit could just be that there are so many newer drugs now. I hope you find peace...

Ursula_I profile image
Ursula_I in reply to PJBinMI

I think Docetaxel, which I am on, is the same as Taxotere. It is working for me on the soft-tissue tumours, but not much change on my bones (after three rounds).

mariootsi profile image
mariootsi

Chemo brain is real. I had taxol during my first dx.

Ski2sea profile image
Ski2sea

HiI was diagnosed de novo in 2018. I was hauled right off to four rounds of Adroymicin/Cytoxin — aka A/C. And 12 rounds of taxol. Compared AC, taxol wasn’t that bad. It is chemo, but it wasn’t as bad like A/C was. The combo worked for me and I am currently stable (my continuous meds are letrozole/Ibrance and zolodex)

My hair actually started to grow back on taxol but I lost my eyelashes but I did not on AC. I did feel crummy but I did what I had to do, rested a Iot and walked every day. I worked all thru chemo, took 1/2 day for treatment and a recovery Monday. A schedule that worked for me.

The nurses and my oncologist were great with managing symptoms.

Not sure if this response is what you were looking for but I thought to share.

Take care ok? Sending hugs and a smile to you

Tara ❤️

in reply to Ski2sea

Thank you so much that is very informative and encouraging. They say that with each round of chemo the side effects get worse so bit scared of that. The oncologist said the cancer is active and cannot be cured but managed.. The first oncologist said he couldn't operate as there would be too much to do. I think I am having the chemo to try to shrink the tumors a bit although the breast is red with spots and a weird color. It's so frightening. Thank you for your help.

Cher96 profile image
Cher96

Hi FirebirdI had stage 2 BC in 2019 with one lymph node involvement. After surgery they started me on heavy duty chemo beginning with A/C (adriamycin and Cyclophosphamide) and then 12 weeks of taxol. I then had radiation for 6 weeks and then one year of herceptin/perjeta. I'm in my 70's and dealt with the chemo pretty well. The oncologists know how to take care of side effects, but everyone reacts differently. My breast cancer was HER-2 positive and 30% estrogen positive. They started me on anastrozole after all this, which I think is like letrozole. I'm surprised they didn't have you on chemo after the surgery. For me the chemo was not so bad. I lost my hair, ( I had very long salt and pepper hair)but that's a small price to pay to stop the breast cancer, and I discovered that I had a really nice shaped head, so I immediately went out to buy some large earrings! It was an interesting look. I also developed a bit of neuropathy from the taxol (which made my toes and fingertips tingle), but nothing that I couldn't handle. I thought my cancer journey had ended on January 6th of this year, but unfortunately I was diagnosed in the Spring with ovarian cancer that apparently has nothing to do with the breast cancer, but that's another story. Good luck!

Cher 96 (Joan from NY)

in reply to Cher96

Thanks for replCher 96. I didn't have any surgery as the oncologist said there would be too much to do. The chemo is just to shrink the tumors as they said they couldn't cure them or get rid of them. She said the cancer is active as my breast is red and has spots or places so may come through the skin I'm scared. I don't know if it will work. I'm 82 years old and so maybe I should just accept the obvious but still want to cling on to life if I can. All the best to you.

You may also like...

Hello

trying to work, etc. I am stable health wise I think (had a pet scan done yesterday). With taxol I...

Hello

first diagnosed and treated for breast cancer in 2016. I still work full time and apart from...

Hello

close. I regularly see my Oncologist, PCP, Psychiatrist, Therapist, Breast Cancer Social Worker and...

Hello

I've been Stage IV mbc since December 2019, on Ibrance / Letrozole but now facing a change. Those...

hello