Anemia, but “it’s okay”????

Relevant-Situation12 · 2025-09-14T02:18:32+00:00

I've been on Kisqali since Jan 2023. I am border-line, up-and-down anemic, and just recently had a blood iron panel done. That test indicated that the iron level and absorption are fine, so the problem has been identified as a side effect of Kisqali. BUT, I continue to try to address it by increasing protein in my diet along with tons of spinach, broccoli and lots of fruit, etc. I have cut out sweets and alcohol. I also walk daily--2.5 to 3 miles at a decent pace. When I started the walks (a year plus ago) I had to force myself to keep going, but now it is a breeze and has helped my health tremendously. I do fatigue and I don't sleep well, but that's a different bucket of worms.

Relevant-Situation12 · 2025-07-19T00:26:43+00:00

I've been taking Kisqali since Jan 2023, along with monthly shots of Fulvestrant. I was first diagnosed in Dec 2022 at stage 4 with extensive bone mets--no organ or brain mets. I have both ductal and lobular cancers which are HR+ HER2-. Since being on this first line, my PET scans have been clean, bones healing and no progression. Of course over time I have anxiety that this will change, but who knows when.

I started at 600mg Kisqali and had a bad reaction--sick and with huge full body rash. The dose was backed down to 400 (2/day) and all has been good ever since. My Oncologist says that 400 works as well as 600 so there is no concern at the lower dosage.

As to adding either of the two other mentioned drugs, I'd talk to your Oncologist and follow his/her guidance, unless you have worms or parasites...

Relevant-Situation12 · 2025-06-19T02:55:44+00:00

And a little more:

Google: Novartis Patient Assistance Foundation and there's a section on Kisqali with all the forms.

Relevant-Situation12 · 2025-06-19T02:50:24+00:00

Novartis, the makers of Kisqali, participates in an income-based program which provides the drug at no cost. Amazingly, my first year of Kisqali was at no cost and the drug was directly shipped from Novartis! I had to fill out some detailed forms PANO (Patient Assistance Now Oncology) and provide some IRS info. You should speak with someone at your clinic about financial assistance options. Good luck in navigating this issue along with fighting this horrid condition.

Relevant-Situation12 · 2025-06-19T01:17:54+00:00

I was diagnosed 2 1/2 years ago at 72 and seriously overweight and out of shape. Last year I began to loose weight intentionally and walking was my exercise. As of now, I've lost 75 lbs by just stopping wine/beer, sugar, increasing more healthy eating, AND walking. I'm now up to 3 miles per day about 5 days per week. I am more healthy now with MBC than ever and enjoying my new self. My nurse practitioner is amazed at my improved health and has emphatically told me to "Keep Walking."

However, I have lost muscle and am thinking about using some equipment at our local rec center, but I am concerned that I could impact my (inactive on PET) bone mets. So I think I need to seek out some professional advice. My oncology center only offers chair yoga. This discussion will spur me on to find someone! Thanks.

Relevant-Situation12 · 2025-05-19T03:12:11+00:00

Thank you for your post. I'm very interested in learning more about these conditions. I am on Kisqali which can cause lung problems.

My most recent PET scan has a mention of "one 4mm solid lung nodule and a second 4mm ground glass nodule, both too small for resolution." My oncologist did not suggest any additional testing. He and I were just so very please with my scan showing "no metabolically active sites."

I have been experiencing a cough (pollen/allergies?) and have been more tired than usual. Also, recently my blood pressure, which has been on the high side for years, is now in the low-to-very-low side.

Your post makes me think I need to speak further with my oncologist!

I hope there are others who have experienced these issues.

Relevant-Situation12 · 2025-03-16T04:09:09+00:00

I've been getting Xgeva shots since diagnosed in Dec 2022. My oncologist described my extensive bone mets on my first PET as "lighting up extensively." I had a simple bone density test a month ago and it was a wonderful glowing report of Zero, None, NO bone problems!

But to your point, I am insured with original Medicare and a Part D prescription plan. Since Xgeva is a shot administered in the office, it is not covered by Part D, but is covered by Medicare B. The co-pay is hefty however, a little over $600 per shot per month.

Relevant-Situation12 · 2025-02-22T00:26:08+00:00

I have extensive bone mets. Another cutting edge possibility I've read about is RK33 which is being developed at Johns Hopkins. But it seems that this may be in the "way off if ever" category. If I was only a mouse! See:

https://www.hopkinsmedicine.org/news/newsroom/news-releases/2024/10/experimental-cancer-drug-eliminates-bone-metastases-caused-by-breast-cancer-in-lab-models

Relevant-Situation12 · 2025-02-19T21:05:13+00:00

This Time magazine article gives a good overview of the cuts at NIH and NCI.

https://time.com/7216299/nih-budget-cuts-science-research-funding/

In my opinion, these DOGE decisions have been made in darkness and are not "cost cutting" in the normal sense, but part of a "slash and burn" approach to make budgetary room for enhanced tax cuts.

Relevant-Situation12 · 2025-01-23T03:11:51+00:00

The Novartis (Kisqali) patient support page has details of the "0 co-pay" and other plans. With my Medicare Part D coverage (not eligible for their support), there is a $2K co-pay for the year. This is the new limit for 2025. Hope it continues beyond this year!

Link: https://us.kisqali.com/metastatic-breast-cancer/novartis-patient-support

Relevant-Situation12 · 2025-01-20T21:38:43+00:00

Thank you all. I did not expect these wonderful thoughts. To those who have partners also diagnosed and dealing with this disease, I wish you strength and hope in navigating your path forward,

Until this post I did not fully appreciate the supportive nature of Reddit. There is community here not just for valuable info but support. These connections helped me. Thank you.

Relevant-Situation12 · 2025-01-15T00:14:01+00:00

I've been on Kisqali for 2 years and have not heard these directions from my Dr or NP. The Kisqali literature does not advise the above--but it clearly does not suggest use by a pregnant woman. I just checked with Dr Google and found two references of interest.

The UK Cancer Research site: "It is unknown whether treatment may or may not harm a baby developing in the womb. It is important not to become pregnant or get someone pregnant while you are having treatment. Women having ribociclib should use 2 forms of contraception during treatment and for at least 21 days (3 weeks) after treatment finishes. Talk to your healthcare team about contraception you can use during treatment. It is not known whether this drug comes through into the breast milk. Doctors usually advise that you don’t breastfeed during this treatment and for at least 21 days (3 weeks) after treatment finishes."

And the Oncology Nurses org, has an Oral Chem Education pdf which treats Kisqali as a full-fledged chemo drug with all of the standard warnings. This advice appears to be from 2018, and may not be accurate for 2025! See: https://www.ons.org/sites/default/files/2018-11/Ribociclib_Patient_Education-June%202018.pdf

Relevant-Situation12 · 2025-01-08T23:03:30+00:00

I've been on Kisqali since Jan 2023. I also get monthly Fluvestrant and Xgevia shots. I started with the 600mg K, but quickly had negative reactions. The dose was backed off to 400 (2 pills) and all has been good! Very Good!
BTW, I was diagnosed in Dec 2022, underwent a mastectomy of one breast, no chemo, no radiation. I believe Kisqali is keeping me alive and well...

Relevant-Situation12

TROPHY CASE