Slight Progession - abandon Ibrance? - SHARE Metastatic ...

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Slight Progession - abandon Ibrance?

Magsue profile image
19 Replies

Hi - Love some thoughts... Original Stage3 diagnosis in Feb 2011. New diagnosis Stage4 Feb 2018. Started Ibrance, Letrozol and Lupin shots in March due to Liver Mets, chest wall and lymph progression with some small pulmonary lung. Responded great 1st scan showed deceases or totally gone -excluding Liver which was stubborn. Last weeks scan showed progression of 2 new spots on Liver and fluid in lung which Oncologist thinks is cancer. Has anyone stayed the course on Ibrance after progression? Honestly, I’ve had a terrible STRESSFUL two months caring for my father 24/7 who was diagnosis with demensia. So I don’t want to panic or overreact, but my oncologist is considering moving to chemo. I’d love to hear if anyone has stayed on Ibrance with small progression and turned things around. I’m doing so well limited side effects and my stress is much better since my dad has moved out of my house. And I’m back on my Radical Remission protocol!

Thanks in advance for any input.

Good health to all!

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Magsue
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19 Replies
Tap321 profile image
Tap321

Are you taking letrozole? Its usually the drug you are taking with ibrance that might be failing. The oncologist often changes that. Wishing you well.

Magsue profile image
Magsue in reply toTap321

Yes I’m o Letrozol and Luprin shots as well. There has been no mention of moving that - just that hormonal treatment is not working. I have a second opinion with UCSF tomorrow - I’ll ask that question! Thank you for your thoughts amazing group here.

Ibelong profile image
Ibelong in reply toMagsue

If they are saying hormonal treatment is failing, that is indicating Letrozole possibly Lupron is failing not Ibrance. Ibrance works differently and targets cancer cells not your hormones. It sounds like a good discussion to have with the doc before moving to chemo. At stage IV it is recognized we will be in treatment for a life time. It’s a fine line of options and waiting to see if cancer progresses. I was pulled off both in favor of chemo. Now I have less drugs for future treatment as it proved that the cancer was no longer responding to those therapies.

You must be hormone positive. How about asking about the effects taking out your ovaries would be to you? If you haven’t explored that option. I only say this because I think the lupron is ultimately trying to stop the ovaries from working at producing hormones at this point. I was advised to do the same. Ultimately the initial aggressive chemo I had stopped them from working alltogether. Still my doc thought removal was best.

I wish you the best of luck in your decision making.

Tap321 profile image
Tap321 in reply toIbelong

I agree with you on your response.

PLASEM profile image
PLASEM

You could switch from Letrozole to Faslodex shots and see what happens, I know the feeling, we already got used to the medication and we are afraid of new medicine side effects, God God bless you

SeattleMom profile image
SeattleMom

Hello, Sue,

So sorry to read that your scan showed some progression in tumors. I'm assuming you are hormone receptive, due to your treatment with Ibrance and letrozole. Also, so sorry about your dad's situation. I know from my own experience that helping an aging parent is extremely stressful, particular when you end up with insufficient time to care for yourself.

You don't mention whether you are pre-menopausal? If so, prophylactic ovary removal is sometimes recommended. If you are post-menopausal, I have read that, if other hormonal therapies stop responding, some patients are treated with estrogen suppressors like megestrol (a progestin) or fluoxymesterone, an anabolic steroid that lowers the amount of estrogen in the body. Estrogen is the fuel for tumor growth. There are a lot of hormone therapies out there; not sure if your oncologist is considering these prior to chemotherapy.

You also may want to contact an upper tier research oriented breast cancer center for a second opinion. Most will see you at any time when you are considering a treatment change. God bless you and shine His healing light on you, Sue! You are in my heart and prayers! XXOO Linda in Seattle

lashinator profile image
lashinator

I am on the same combo as you, with liver mets. I have asked before- when do you stop the combo. My doc says after the numbers go down, they will eventually start to level out, and at that time they could bump around a bit. Dont panic as of yet. I would let it ride for another scan. Maybe they will level off. I am having my ovaries removed next month so I can skip the Lupron shots. Glad you can concentrate on yourself for a while. Good luck

NPmary profile image
NPmary

The standard of care is to take ibrance til it stops working if there is progression, switch to another med. The plan for everyone with stage IF is treat til it doesn't work anymore and decide yourself when you can't do it any more. Get palliative care if you need help with pain, maybe they can even help you with figuring out care for your dad? I am so very sorry you are going through this!

Praying for you.

charlie1712 profile image
charlie1712

I was on Ibrance, Zometa and Faslodex for 2-1/2 years, never reduced dosage of Ibrance, never took a week off and continued until same protocol showed some progression in the bone mets. There were a few side effects, but nothing I could not tolerate. My neutrophils were low, but saw onc monthly and blood every 2 weeks. Onc switched chemo to Afinitor, Aromasin and Xgeva. Have cough, shortness of breath and of course, good old fatique, but still quite functional. I was dx in 2012, am 71 years old, travel from coast to coast to see our kids, grandkids, and haven’t been hospitalized except for mastectomy surgery. I figure if I can get 2+ years from each chemo protocol, I’ll be quite satisfied. Charlie17

Cshipley123 profile image
Cshipley123

I just had the same thing happen. I was on same meds as you and 2 new spots in my liver showed up. I’m no longer on Ibrance and letrozole. I waiting to hear from John Hopkins regarding an immunotherapy trial.

Magsue profile image
Magsue in reply toCshipley123

Hi any update from John Hopkins? Curious if they are recommending moving you off Ibrance. Both my primary and second opinion at UCSF recommended the move to Afinitor and Flaslodex. So I stared today. Praying I see some change soon! Trying to stay positive! Anyone have advice for my new combo??

Prayers to all.

Cshipley123 profile image
Cshipley123 in reply toMagsue

I see a doctor today about a clinical trial. I’ll let you know how it goes!

Cshipley123 profile image
Cshipley123 in reply toMagsue

I started the Hopkins trial yesterday! It was a long day!

GrandmaRuthy profile image
GrandmaRuthy in reply toCshipley123

Sending prayers for you! Which study are you in? And is Memorial Sloan Kettering in the same one?

Cshipley123 profile image
Cshipley123 in reply toGrandmaRuthy

I'm in a study at John Hopkins in Baltimore Maryland. It's a county wide study but I'm not sure what other places are participating. It's faslodex, immunotherapy, and a new pill called Ipatasertib. The pill isn't FDA approved yet. I haven't had a scan yet to see if it's working. I've had 2 treatments. They are every two weeks. My next one is tomorrow.

Cshipley123 profile image
Cshipley123

I go for a new biopsy, scans, and bloodwork to see if I qualify this coming week. I’m hopeful that all goes well and that I get into the arm of the study with the immunotherapy and some new pill. I’ll keep you posted!

Magsue profile image
Magsue

Are u ER+? I was under impression no immuno trials for ER+ - best of luck to you! Look forward to hearing more!!

Cshipley123 profile image
Cshipley123 in reply toMagsue

Yes I am Er+. This trial just started at Hopkins in Baltimore, but it's a nationwide study.

Cshipley123 profile image
Cshipley123 in reply toMagsue

I'm in a study at John Hopkins in Baltimore Maryland. It's a county wide study but I'm not sure what other places are participating. It's faslodex, immunotherapy, and a new pill called Ipatasertib. The pill isn't FDA approved yet. I haven't had a scan yet to see if it's working. I've had 2 treatments. They are every two weeks. My next one is tomorrow.

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