CPR Funds Now Open: Multiple Myeloma, Breast Cancer The specific eligibility criteria for each fund can be found at https://copays.org/funds/. For personal assistance with the application process please contact us toll-free at 866-512-3861 or visit our application portals at https://portal.copays.org/#/login, with access available for patients, providers, and pharmacies.

CPR Funds Now Open: Multiple Myeloma, Breast Cancer The specific eligibility criteria for each fund can be found at https://copays.org/funds/. For personal assistance with the application process please contact us toll-free at 866-512-3861 or visit our application portals at https://portal.copays.org/#/login, with access available for patients, providers, and pharmacies.

I’m a 42-year-old woman and having high risk CLL is quite unusual for us. Today, I got my Calquence delivered, and it came with a little freebie from the pharmaceutical company. Which, of course, also came with a pamphlet and information about the medication. Of course, all of the photos are of older folks. And I think I just have to giggle at it because what other choice do we have? I joke that I’m the wrong kind of unicorn-certainly unusual and interesting to my care team but also I feel like sometimes they don’t know what to do with me or what to say to me. On my last visit, my nurse practitioner tried to reassure me that people with CLL have “full lifespans “ and that I should expect 20 to 25+years. Which is amazing in the context of cancer. But when I think about the fact that my son in 20 to 25 years will be younger than I am now. It just doesn’t feel like enough time.. So sometimes I feel like gallows humor is the only option. I joke about things like , Why contribute to my 401(k) or IRA if I’m never going to be old enough to use it? And while some might find that morbid I choose to find humor in it because somehow it keeps me moving forward. So I look at these photos of older patients, and I just have to laugh because something the pharma company is targeting at me reflects a place I may never get to. And if I don’t choose to find that funny then it’s just too sad. To laugh at how ridiculous this all is somehow makes it all less heavy.

Hi to everyone, my name is Santa I am a caregiver for my husband he is 67year old, we live in New Jersey he got diagnosed in August 2024, with Kappa light chain with high risk cytogenic TP53 abnormality and 1q gain. in June 2025 did stem cells transplant failed in one month. November 2025 did CAR T (Carvicty) it’s been 3 months and his Kappa light chain went from 17.1 mg in February and in March 308 mg. Anyone had a similar experience failed CART in 3 months? What medications you are taking? Any bad side affects? I just want some quality of life for my husband. I appreciate any advice. I feel like having a second opinion from another myeloma doctor.

I turned 40 in 2016. That same year I was diagnosed with a myeloproliferative neoplasm (MPN) with a Jak2 mutation. In the years that followed I have been diagnosed with Multiple Sclerosis and Smoldering Multiple Myeloma. I'm wondering if anyone else has experience, and some advice, for balancing their treatments and care for a variety of chronic illnesses.

Not sure if anyone actually participates in this group since I see the last post was in July so I guess this is me attempting to connect. I'm a 49 year old woman who was diagnosed with the Jak2 mutation back in 2016 when routine labs came back with barely elevated platelets. Since then I have added a few more diagnoses to my list. Wondering if anyone else has experience balancing their treatments and care for a variety of chronic illnesses. Thanks

I finally received the last report. All results were pointing to mrd negative until the last one. The one that digs the deepest. I am just above the cut off. So still in a deep remission but not Mrd negative. I was given a few options. 1 - continue with 10 mg lenalidomide 21 days on and 7 off. 2 - drop to 5 mg instead of 10 to help lower some side effects and secondary cancer risks. 3 - add darz shots once a month to try to push me to the negative. I hear that sometimes it will get there on its own with the maintenance med. I am three years post stem cell transplant. Kappa light chain 11:14 trisomy 9. I am taking some time to digest this. Looking for any advice. Thanks!

So I had to stop taking my medication for a month so I could get my T cells harvested for car t. I’m a bit worried because I just had bloodwork done after the month and my kappa is normal but my lambda is low and my ratio is high. (4.9) I know that the ratio is the most important. I started my venetoclax back up today and will take the pomolyst tonight. Should I be worried