Metastatic Breast Cancer treatment options

Posted by junec @junec, Oct 13 10:28am

Hello all, Firstly thank you for creating this forum. Late August I was diagnosed with stage 4 MBC that has gone to @3 bones and through the skeletal system. Bone biopsy confirms BC in bones but PET shows the bones are not hypermetabolic where the breast & lymph are hypermetabolic. I'm in Raleigh NC. My surgical & medical oncologist have ruled out surgery, chemo & rad leaving me with one option, Ibrance with an inhibitor. I've read the trials ( 2016-17) on Ibrance and it seems like 79% of participants have lower immune responses. Firstly, Like to know if anyone has feedback on a newer protocol/drug regime as this seems to have been developed 3-4yrs ago. And anyone have personal experience with Ibrance if they could let me know what their day is like, quality of life. I understand everyone's different… I'm 68yrs, living alone and this decision weighs heavy on my shoulders. Thank you for your responses.

junepic2020a

Liked by dthayer

Hi @junec, great topic to start. I'm tagging fellow breast cancer met-thrivers like @claudiamaria @mom23boys @djwc @spooz2 @hockeymom25 @elizm @trivia @ja5747 and @dianamiracle to join this discussion to share the treatment options they have considered, are on or perhaps stopped.

Ibrance is a treatment option that several have experience with. June, you mention that you're concerned in particular about the reduced immune response when on Ibrance. That is certainly something to consider, but not an insurmountable side effect with extra cautions. However, during this time of COVID and flu and other viruses, I can understand your giving it careful thought. I'll be interested to hear what others have to say about the precautions and awareness they live with while on Ibrance.

June, Do you think living on your own makes having low immune response harder or perhaps easier to manage?

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Hi! I have been on Ibrance and anastrazole now for 2.5 years. Fatigue is real — but I still play golf and Sunday we biked over 20 miles. My oncology doc does not seem concerned about my blood work results and lowered immunity. She says if I develop a fever, etc to contact her, but so far so good. We have traveled some but have always worn masks and have wiped everything down as we have traveled. Again, so far, so good.
We are walking the line between living in the now and being very careful with my health and diagnosis. Best of luck as you make decisions. Be sure your insurance will cover the cost of Ibrance!

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@colleenyoung

Hi @junec, great topic to start. I'm tagging fellow breast cancer met-thrivers like @claudiamaria @mom23boys @djwc @spooz2 @hockeymom25 @elizm @trivia @ja5747 and @dianamiracle to join this discussion to share the treatment options they have considered, are on or perhaps stopped.

Ibrance is a treatment option that several have experience with. June, you mention that you're concerned in particular about the reduced immune response when on Ibrance. That is certainly something to consider, but not an insurmountable side effect with extra cautions. However, during this time of COVID and flu and other viruses, I can understand your giving it careful thought. I'll be interested to hear what others have to say about the precautions and awareness they live with while on Ibrance.

June, Do you think living on your own makes having low immune response harder or perhaps easier to manage?

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Thank you for sharing with other the more feedback I can received about how someone's actual day is like on this drug it will help me with a decision. In answer to your question, it easier to deal with the low immune if I just stay home. But I want to visit most of my friends who live around the country and my grandson lives in PA far from me. So being mobile as long as possible is very important to me.

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@oilermama

Hi! I have been on Ibrance and anastrazole now for 2.5 years. Fatigue is real — but I still play golf and Sunday we biked over 20 miles. My oncology doc does not seem concerned about my blood work results and lowered immunity. She says if I develop a fever, etc to contact her, but so far so good. We have traveled some but have always worn masks and have wiped everything down as we have traveled. Again, so far, so good.
We are walking the line between living in the now and being very careful with my health and diagnosis. Best of luck as you make decisions. Be sure your insurance will cover the cost of Ibrance!

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Thank you for the detailed response it was very helpful. I too want to travel and have always been very careful. The copay is very high but there's some programs I hope will make it more affordable. That fatigue is real but you are still active is hopeful info for me.

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@junec. I have met bc to the bones. I have now gone thru all three of the AI’s, as I have had severe reactions to each of the meds to the point when on exemestane had me feel like I was dying. There have been recent articles about ibrance on the mews and there seems to be such a slight benefit it may or may not be worth taking. If it makes you feel worse and only gives you 3-4 more months of pain and agony is it worth it? I don’t mean to sound pessimistic but having this disease is hard enough but the horrific side effects I had were worse. Have decided to take a natural route, but this is not for everyone.

Liked by trixie1313

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I have MBC to my stomach and liver. When first diagnosed with the liver mets, I changed drugs and started Ibrance. I was on it for 5 months before an MRI showed my liver mets more extensive than originally thought so switched again to a chemo drug. While on Ibrance, my white blood cell count plummeted (expected) so needed to be careful of situations that could lead to possibility of infections. The low counts did not have a physical affect on me at all. The only other thing I encountered is that I started loosing circulation in my fingertips multiple times a day. I purchased a hand heater that helped a lot. Wish I could offer more but just wasn’t on it long enough. My best wishes to you on this mets journey!!

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Thank you for sharing your experience best wishes to you also!

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@dianamiracle

@junec. I have met bc to the bones. I have now gone thru all three of the AI’s, as I have had severe reactions to each of the meds to the point when on exemestane had me feel like I was dying. There have been recent articles about ibrance on the mews and there seems to be such a slight benefit it may or may not be worth taking. If it makes you feel worse and only gives you 3-4 more months of pain and agony is it worth it? I don’t mean to sound pessimistic but having this disease is hard enough but the horrific side effects I had were worse. Have decided to take a natural route, but this is not for everyone.

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Thank you for sharing this. When I got diagnosed in Aug I started seeing a ND MD and he's placed me on a strict diet many vitamins and supplements ( which have some of the same properties as the drugs) and a Homeopathic MD virtually in Germany who has set up an herbal, homeopathic & cell salts protocol. The reason they're able to work with me as I haven't taken any drugs yet. I am looking into new Immunotherapy trials that would match my cell type. The journey begins, I applaud your courage.

Liked by trixie1313

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Hi @junec, My lobular breast cancer metasticized to my stomach after six years. There is also evidence of it being in one of my ribs. I have just completed four months of Ibrance and Anastrozole. My lower immune system hasn't been a problem other than fatigue. But I take the pill three weeks on and one week off, so that helps. I am 67 years old and live with my husband who does everything for me. I was on AIs for the first three years after diagnosis and then Tamoxifen the last of the six years prior to mets. I'm on Medicare and the co-pay is high but I am under the impression that it is one of the newest treatments available to me so I have felt fortunate to use it. I wish you all the best and hope this helps. The lower immune system from using Ibance is not enough to keep me off of it.

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@junec

Thank you for the detailed response it was very helpful. I too want to travel and have always been very careful. The copay is very high but there's some programs I hope will make it more affordable. That fatigue is real but you are still active is hopeful info for me.

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I assume you are getting Ibrance from a specialty pharmacy, check with them to see if you qualify for the $0 co-pay card from the drug maker. Also, have you done any geonomic testing? I did mine through a company called Foundation One (I believe there are others) – my cancer center helped with the application process and cost for the patient is dependent on many variables, annual income being one of the biggest considerations. The purpose of the testing is to check the composition of your tumor tissue against all drugs to find one that might respond better for your situation. I matched to a couple of drugs, one of which I just started a couple of weeks ago. Best wishes!

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Yes, my doctor said she has paperwork for me to get the $0 copay if I wish. I have been given a name to get the Greece test which I think is what you're mentioning with Foundation One I'm not sure I think the genome test they gave me was just to see if it was an inherited gene or not. There's so much information coming at me from different sources, I have to say I'm overwhelmed. Thank you for reminding me about this.

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I am starting 10th month on IBRANCE & letrozole-my side effects are fatigue, hair loss & joint pain. So far the drugs have stopped new progression of bone Mets. My side effects are tolerable-exercise, good nutrition, prayer & support of family & friends certainly help to counteract & keep me positive & hopeful.
At start, Dr lowered ibrance dosage as he monitored my WBC. With lower dosage, WBC was not as severe.
@junec-good luck to you as you make decisions!

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@djwc

I am starting 10th month on IBRANCE & letrozole-my side effects are fatigue, hair loss & joint pain. So far the drugs have stopped new progression of bone Mets. My side effects are tolerable-exercise, good nutrition, prayer & support of family & friends certainly help to counteract & keep me positive & hopeful.
At start, Dr lowered ibrance dosage as he monitored my WBC. With lower dosage, WBC was not as severe.
@junec-good luck to you as you make decisions!

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@djwc
Biotin may help with your thinning hair – I had read about that and take a high dosage and seems to help with mine due to aromatase inhibitor. However, if you do take it, you need to be off of it a few days before labs, such as thyroid, as it can skew results. Thank you for sharing your experience with Ibrance for @djwc.

Liked by elizm

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@djwc

I am starting 10th month on IBRANCE & letrozole-my side effects are fatigue, hair loss & joint pain. So far the drugs have stopped new progression of bone Mets. My side effects are tolerable-exercise, good nutrition, prayer & support of family & friends certainly help to counteract & keep me positive & hopeful.
At start, Dr lowered ibrance dosage as he monitored my WBC. With lower dosage, WBC was not as severe.
@junec-good luck to you as you make decisions!

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I'm just so scared all of a sudden,

Liked by trixie1313

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@djwc

I am starting 10th month on IBRANCE & letrozole-my side effects are fatigue, hair loss & joint pain. So far the drugs have stopped new progression of bone Mets. My side effects are tolerable-exercise, good nutrition, prayer & support of family & friends certainly help to counteract & keep me positive & hopeful.
At start, Dr lowered ibrance dosage as he monitored my WBC. With lower dosage, WBC was not as severe.
@junec-good luck to you as you make decisions!

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I'm just so scared

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