MBC acquired during pregnancy - SHARE Metastatic ...

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MBC acquired during pregnancy

JonaC38
JonaC38

MBC patient under Ibrance and Letrozole. Is it possible to take a break from both Ibrance and letrozole for 2wks? I feel joint pains and tiredness all the time so I am wondering if taking a longer break would help. Please comment your experiences and your suggestions are highly appreciated.

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I’ve taken3 weeks off Ibrance but never letrazole as most people attribute joint pain to that

A question for your oncologist

Barb xx

JonaC38
JonaC38 in reply to Barbteeth

Thank you for your responce. I know that no need to stop letrozole but I just want to take a break from all these meds since my scans showed huge shrinkage and no more mets on liver and lymphnodes despite of not taking letrozole during breaks of ibrance. I do not tell my oncologist but lookslike it is ok. I am also confident that my immune system is stronger if I do not take both meds based on my blood test. But still I will continue taking them till it is working hopefully it will clear my bone mets too.

Hi Jona. Welcome. Unfortunately joint pain and certainly fatigue are very common with this drug combo. People do take longer periods off from the Ibrance due to low blood counts (always in consultation with their oncologist) but I seriously don't think it's a good idea to do it for the reasons you gave. Letrozole is meant to be taken everyday and I've never seen a recommendation for something otherwise. It sounds like the drugs you are taking are working on your cancer with shrinking of your tumors so I would personally rejoice and carry on. If I read your post below correctly you haven't discussed this with your oncologist but are basing your thoughts on something you have researched online. Please reconsider this. At this point in time MBC is not curable and I'm assuming you are young and your baby looks beautiful. Do what you can to make sure you are around a very long time and get to see her grow up and become a women. Take care.

Sandra

JonaC38
JonaC38 in reply to girlsptz

Really appreciate your thoughts. My ovaries were removed as well last year around Sept. This is one reason why I also stop taking letrozole during Ibrance break. I assume that being ER+PR+Her2-, without my ovaries, cancer cells will no longer too aggressive. BTW I had radiation to my spine mets which is also greatly improved based on scans and Ibrance must have helped a lot since I no longer feel the pain.

Barbteeth
Barbteeth in reply to JonaC38

Just because your ovaries have gone doesn’t mean you have no oestrogen..aromatase converts androgens into oestrogen which is why a lot of postmenopausal ladies get mbc..even though our ovaries have stopped working so take the letrazole as it’s an aromatase inhibitor and will stop oestrogen

Barb xx

JonaC38
JonaC38 in reply to Barbteeth

good point, thanks for the advice

Purple60
Purple60 in reply to JonaC38

Most of us are postmenopausal and may have had hysterectomies and we still need to take letrozole. Other cells in our body make estrogen as well as the tumors themselves. So i wouldn’t jump to the conclusion that if your ovaries are removed you are covered. Good luck!

Bishtown
Bishtown in reply to JonaC38

I had a complete hysterectomy 20 years ago. Was diagnosed with metastatic breast cancer last year. Immediately put on letrozole. I did not think I needed it, with no ovaries, and doctor assured me that my body still produced hormones, and yes, I had to stay on it.

Mimigram
Mimigram in reply to JonaC38

I had both ovaries removed but my oncologist told me your liver produces estrogen.

I know most of us have taken time off from Ibrance due to low bloodwork, but I believe letrozole should be taken everyday. I took letrozole after my initial dx for five years and even with aches and pains and fatigue, my onc never gave a break. Speak with your onc and see what can be done.

JonaC38
JonaC38 in reply to mariootsi

Appreciate your thoughts. I try to combine alternative healing with western meds which I believe both works. I mentioned this to my onc and he doesn’t have any issue about it. Since my mbc is acquired due to pregnancy the main driving force is no longer present as I am no longer pregnant and no longer have ovaries. My point is letrozole is not the major player in my own opinion so I can take a break. Clinical trials also showed no significant contribution, please do not take my opinion on this as I am not a MD doctor just research associate PhD. Thank you for your responce.

Dear JonaC38, I was just diagnosed with stage IV MBC, in my right lung, now,

and have started Letrozole for first time on Feb 2 2018. I am wary of feeling

side effects, but so far, only a little gas/nausia in morning, upon waking, which

goes away quickly. How long have you been taking Letrozole? I have no

experience worthy of giving advice, but I am anxious to know when I might

experience side effects after first taking Letrozole, as compared with your

experience.

JonaC38
JonaC38 in reply to Arkait

Hello Arkait, I started Letrozole around June 2018 a month before I combined it with Ibrance. I think the diarrhea like episodes were attributed to Letrozole but the rest like joint pains and indigestions are all from Ibrance. I do not mind the diarrhea as it is sporadic.

Arkait
Arkait in reply to JonaC38

Hi Jona, Thanks for sharing your experience with Letrozol ahd Ibrance

It did seem Ibrance offered both better results and more side effects.

I have opted to just go with the Letrozol for now. May change my mind of course

JonaC38
JonaC38 in reply to Arkait

If you have the chance to use ibrance I highly recommend to take it. Mbc stage IV needs to be addressed aggressively and only the combo med with Ibrance can help stop the spreading. Based on clinical studies it can even clear all cancer cells so do not hesitate to use Ibrance.

I had complete hysterectomy in 1996, stage 1 breast cancer 2000. Treated with tamoxifen and then Femara (Letrozol). Diagnosed with MBC with Mets to lungs in 2017. Currently, being treated with Ibrance and Letrozol. I would recommend staying on Letrozol even if you need an Ibrance break. I wish you well. Blessings, Hannah

I take on over the counter joint pain supplement that my onc approved & it has help a lot

Can I ask which otc medication you’re taking? My joints hurt too...😔

I take one that has Glucosamine & Chondroitin as main ingredients, I live in Michigan & buy Meijer brand. My bottle says on the front, supports joint mobility & comfort. Hope this helps. Praying for you.

I’ve never taken a break from letrazole, I’ve taken a 2 week break from Ibrance due to labs.

I’m off Ibrance for 2 1/2 weeks due to nuetropenia. I get a once a month Faslodex inj so that’s not much of a problem. I’m still getting fevers so I don’t know when I can start again. I’d ask your dr but 2 weeks isn’t that long. Maybe ask for Faslodex injections?

JonaC38
JonaC38 in reply to Pookie510

I tried 2wks off with ibrance yet wbc and neutrophils below normal but 3wks off is enough to bring those to normal range. I just had my MRI a week ago and hoping for better results. I listen to my body and based my decisions according to my scans. There shld be a balance between side effects and quality of life. Thanks for your response and wish you conplete healing.

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