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Teeco profile image
12 Replies

Good Afternoon Everyone.

I check this site out occasionally but an not a daily follower. I belong to the Stage 4 Metastatic Breast Cancer Support Group in our area and we do a lot of messaging back and forth as well as weekly meeting (now Viral). I would like to receive some input from anyone who is experiencing, or has experienced, my latest news. After 2 years on Ibrance (75 mg) and Letrozole, my bone scan has shown that things are now progressing and I need a different form of treatment. Due to low wbc's, 75 mg. was the strongest dosage I could take. My oncologist discussed two options.......(1) tamoxifen with Everolimus OR (2) Paclitaxel. Her feelings are that, given I have had extensive endocrine treatment, the toxicities of Everolimus are very negative (mouth sores, etc.) and slower to work. Paclitaxel is in Intravenous form and would mean once a week for 3 weeks, then 1 week off. Is anyone else on this form of treatment? Can you tell me your thoughts on how it is working and what any side effects are?? Can you also advise as to any questions I should be asking my oncologist? I will be seeing her this coming Friday to receive the latest results of yesterday's bone scan and the plans for starting the treatment ........possibly next week. I definitely would appreciate any help that anyone experiencing this proposed treatment can give me. Is anyone aware of any other form of treatment they might be getting as opposed to the Paclitaxel and/or Everolimus and Tamoxifen?? Sincerest thanks !!

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Teeco
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12 Replies
MyMiracle13 profile image
MyMiracle13

I haven’t tried either of the options you mentioned but some ladies here have tried Xeloda as oral chemo.

Bubbles001 profile image
Bubbles001

I’m on Xeloda, an oral chemo, but I had taxol/paclitaxel when first diagnosed 5 years ago. I think it’s typical to go to taxol first as a chemo. It’s very effective for many women and has been used a long time, so I wouldn’t hesitate to try that one. It does/can cause hair loss and neuropathy, so ask about common side effects.

Teeco profile image
Teeco in reply to Bubbles001

Thank you. Certainly not looking forward to either side effect. Lots to consider . Many thanks for responding.

Bestbird profile image
Bestbird

I am sorry to hear you are dealing with a change in treatment. There are still several endocrine therapies to try if you wish, as per the NCCN-approved lines of therapy below. (These are from my book "The Insider's Guide to Metastatic Breast Cancer" which is also available as a complimentary .pdf. For information about approved treatments, symptom management, finding clinical trials and more, please visit insidersguidembc.com/about

As an aside, usually oncologists prescribe Xeloda (capecitabine) which is an oral chemotherapy before resorting to IV chemo. You might want to consider questioning your doctor about his or her choice of IV chemo.

Good luck, whatever you decide.

FDA-Approved First Line Hormonal and Targeted Treatment Options for Postmenopausal Patients in the US (depending upon what, if any, recent treatments the patient may have had in the adjuvant setting):

•The combination of a CDK4/6 inhibitor such as Ibrance, Kisqali or Verzenio with either an Aromatase Inhibitor (Letrozole, Arimidex, or Aromasin) or with Faslodex (Fulvestrant) is the current standard-of-care as initial treatment.

•An Aromatase Inhibitor alone

•Faslodex (Fulvestrant) alone

•Tamoxifen (Nolvadex) or Fareston (Toremifene) alone (rarely used as a first-line therapy).

FDA-Approved Second Line Hormonal and Targeted Treatment Options for Postmenopausal Patients in the US (depending upon prior treatment):

•Possibly any of the above therapies.

•Afinitor with either an Aromatase Inhibitor, Faslodex, or Tamoxifen.

•Verzenio alone (after disease progression on endocrine therapy and prior chemotherapy for MBC).

•Piqray in combination with Faslodex if the cancer has a PI3K mutation

Teeco profile image
Teeco in reply to Bestbird

Thank you. I will check these out and be prepared with questions to ask her. I'm certainly not fussy about doing chemo again. I did 6 months of chemo after my lumpectomy surgery in 2011. Then had 16 radiation treatments after that. I was on tamoxifen for awhile and then switched to letrozole. Two years ago I learned that I had stage 4 mets which spread to my bones. That's when I began Ibrance with letrozole. Last bone scan is showing progression in the bones and that's why she stopped the Ibrance and wants to proceed with a different treatment. I really appreciate your input!

Bestbird profile image
Bestbird in reply to Teeco

Of course! But why not consider Xeloda, an oral chemo, especially in view of COVID-19. And of course there are the other endocrine therapies to mull over. You can also seek a second professional opinion.

Wishing you success on whatever you decide!

MacroMom profile image
MacroMom

Lots of good suggestions here. I agree with asking about other CDK 4/6 combinations, especially if you don't have any other organ metastases. I was also on Xeloda for 9 months before moving to IV chemo. If you do decide to start IV chemo, I suggest asking if nab-paclitaxel is an option. It's a newer form of Taxol that is bound with albumin so it doesn't require the solvent and steroids that are used with paclitaxel. And it seems to work just as well. It's also known as Abraxane.

All the best to you!

Patty

Marieleb profile image
Marieleb

Hi. So I have had the luxury to try them both ( everolimus with afinitor was my second line of treatment after Ibrance- taxol my 5th)... Everolimus was the treatment that gave me the worst side effects of the 2( mouth sores , extremely dry feet, tiredness) , paxol has been ironically more gentle ( well apart from hair loss and nails pain)... But I appreciate I have been quite lucky on this as others have tricky side effects.I would concur with what others have said , taxol is usually used later down the road as Dr tend to go for non invasive / hormone treatments first ( pills or monthly injections)... I am not sure if this based on cost/ inconvenience for patient or deeper medical reasoning.

In my case I wished they had moved to Taxol quicker , as my 2nd ( Everolimus), 3rd ( Faslodex) and 4th ( Xeloda) proved inefficient from get go but meant I waited 8 months ( and allowed it to spread to the liver) before I finally saw some signs of partial disease reduction ( results yesterday!) Now don't read too much in my experience, my disease is a little bugger, for example I only stayed 8 months on Ibrance before seeing progression. 2 years is good going so there looks like going for another hormone therapy treatment would make sense... The best think to do is indeed to chat with your oncologist about why he is suggesting taxol so early...Good luck with everything

blms profile image
blms in reply to Marieleb

Hi, My cancer of 23 years is on the move again for they third time. This time it has spread to my liver and bone, one base of my skull and two beginning in mid ribs. my pleural fluid has gone away which was my second spread. That I found fascinating as I expected it would have spread to my lungs but in some way, I am glad it has not. I am interested in your liver mets and how that manifests itself in your symptoms, meds, scans, etc.

I have not researched new med possibilities because I am currently waiting for DNA, RNA results plus other path to complete. I will then see what available meds actually kill my cancer cells. That is assuming a positive with one.

Where do you live? Did you have this pathology update?

Marieleb profile image
Marieleb in reply to blms

Hello sorry to hear things are progressing. I am in the UK so I think our system is a bit different. I did have the genome test done too but sadly none of the trendy mutations were identified so I was warned my " alternative/ fancy trials" treatment options would be heavily restricted as result. Saying that I have just started a new trial ( TROPIC2) so it turned out not as bleak as my medical team had anticipated.

Up until recently liver mets caused me no trouble at all, well they didn't play ball progression wise as they slowly but surely continue to grow in size and increase in number ( even on taxol!) since cancer spread to the liver in Dec but it didn't affect my quality of life and liver function tests were always good... A few weeks ago however , while I was in between treatments waiting for trial to start things took turn for worse. I ended up in hospital for 4 days with severe abdominal pain and vomiting...My liver function was severely affected and things were going down hill pretty quickly, I really thought that was it! But a few weeks later and I am still here to tell the tale. Liver function back to acceptable level, pain entirely gone and I got my life back! We are not sure if it is new chemo reducing the mets ( one in particular in over 7cm and we fear was the main culprit in recent liver capsule inflammation incident) or if the palliative protocol put in place was enough to kick start liver back into action... To be fair I don't care what did it I am just glad to have got my life back !

I usually have PET scan every 12 weeks ( usually to identify treatment hasn't worked and move on to next one) but the new trial I am on required CT every 6 weeks. I have my next one on 16th Nov, it should show if new chemo is working on liver mets too...

Hope that answers your question . Don't hesitate to reach out if you have Any other.

Take care

Red71 profile image
Red71

I was on Ibrance and Letrozole for 18 months. I had a great response to it at the very beginning. Because of that response, my oncologist decided to keep me on Ibrance (75mg) and switch to Faslodex. While I would rather take the pills, it has been working for 6 months, so switching the AI seems to have given me extra time on Ibrance which I am grateful for. It is the enemy I know. Not looking forward to the time I have to switch! Good luck with your decision. Elaine

viennagirl profile image
viennagirl

Hi Teeco,

I took paclitaxel (or a very similar type of chemo drug) before I had a lumpectomy. It was recommended to me so that it would shrink my very large tumor. It turned out that I was quite allergic to the drug and had to quit but I had about 7 treatments before the reaction to paclitaxel became dangerous. After the seventh IV chemo treatment I almost stopped breathing and that is very dangerous. So if you take it make sure you have some kind of drugs with you at all times to counteract a possible allergic reaction. The drug, even though I only took it for seven treatments was very effective in reducing my tumor. It worked so well that my surgeon said I could go to surgery. After my lumpectomy my Oncologist wanted me to go on another chemo drug but I refused. It might have been a mistake to refuse that drug but it was a much harsher drug and my other doctor said I probably wouldn't be able to handle it. But three years after my lumpectomy I have now been diagnosed with Stage 1V breast cancer. But the good thing is that there are now new drugs that work better for my type of cancer and don't have the side effects of IV chemo treatments. I think you should ask if Ibrance taken orally would be better for your treatment. It doesn't hurt to ask. I am doing well on an Ibrance and Letrozole oral drug treatment. Best wishes for a good outcome for you. Hugs Marlene

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