CLL then long remission and now Myeloma

[keepfit123]

After a long remission of about 8 years , I was diagnosed with Myeloma in August 2022. I was treated with Chemotherapy again (Bortezimib, Cyclophosphamide,Dexamethazone) I achieved a good partial remission and now having a bone strengthener infusion called Zonedronic acid once a month. Apparently Myeloma is a cancer of the blood plasma cell which is also linked to the B cell. How unlucky am I ?

[CycleWonder]

I keep waiting to also be diagnosed with some form of skin cancer as well. I was sunburned a lot as a child; sunscreens weren’t very good at the time and although I sunburned easily, I was a kid and just didn’t care.

I guess on the bright side you are receiving good health care. I hope your treatments have been tolerable and that you’re feeling OK.

[keepfit123 in reply to CycleWonder]

Thanks for your reply. I am ok apart from backache which limits my day to day activities. Cheers, keepfit 123

[Thursday45]

Seems so unfair. You would think CLL would be enough. Take good care.

[keepfit123 in reply to Thursday45]

Thanks for your concern.

[ladyscream]

Sorry to hear about your Myeloma diagnosis, i hope your remission lasts for a very long time.

I have mgus( Monoclonal gammopathy of undetermined significance)of which about 1%

a year progresses to Myeloma or another blood cancer.

I like to keep an eye on my levels as my Mother had mgus that progressed to Waldenstroms Macroglobulinemia. My Father had Cll, so I'm trying not to think myself into anything else, if you get my meaning.

It all seems linked around blood cancers and odd blood readings.

Wishing you well for the future.

[keepfit123 in reply to ladyscream]

There always seems to be something to be apprehensive about. Wishing you all the best,

[Glenvo in reply to keepfit123]

Hi keepfit123,

Sorry to hear about your Myeloma. I am lucky to have indolent CLL and have not needed any treatment. I too was diagnosed with Myeloma in 2022 and had to start treatment right away - I'm on Lenalidomide & Dexamethasone. On the positive side I don't have any bone issues so at the moment I'm pain free. Wishing you a long remission.

Take care

Anne

[keepfit123 in reply to Glenvo]

Good luck with your treatment. It would seem that there are several options. All the best.

[esn1967]

My grandmother died of multiple myeloma. We have no other cases of blood disease in the family besides her and I. My CLL Specialist at Dana Farber believes there is a connection.

[keepfit123 in reply to esn1967]

It is possible there is a link,

[Sewster in reply to keepfit123]

I am curious to know if there really is a link also. My mother died of Multiple Myeloma and my specialist at Dana Farber didn’t think there was a connection.

[Stamphappy]

I'm in watch & wait since my cll diagnosis. When my fears threaten my peace of mind, I try to remember what my priest told me at my brother's funeral. I'm not preaching, just sharing. Perhaps his words can bring strength to your fighting spirit... He said he was taught this - "Everyday, we are given 100 blessings. We have only to look to see them." The more I look for blessings, the more I see them. It crowds out negative thoughts and uplifts my spirit. For example, look at simple things to start and work your way up: Our puppy makes me laugh everyday. The beauty of an iris glimmering in the sunlight. Rain during this drought. The soft look or touch from someone you love. A " Hello" and a warm smile from a stranger, as you walk down the grocery aisle when you're the only one wearing a mask. Being given another birthday. Medicine. Hand sanitizer. N95 masks. Researchers, scientists, doctors, nurses, and everyone working with them. This forum - People who care and reach out even though they feel ill themselves. My God (To each his own) for I find my faith sustains me. Sure, I get terribly down at times, but that's when I work on this list, build hope, and thank my God for his blessings.

I wish you all the best and hope I helped you in some way. 🫂

[keepfit123 in reply to Stamphappy]

A lot of truth and good reasoning in your reply.

[OmBewok in reply to Stamphappy]

Dear Stamphappy, what a lovely post!! I concur absolutely. I find great comfort and support from my faith. I try to look for, and appreciate -- and thank God for -- the blessings that I receive each day. Mine is a simple faith, but it serves me well. Best wishes, and thank again for pointing this out so optimistically.regards,

Om

[Stamphappy in reply to OmBewok]

You're so welcome! Sometimes we "can't see the forest for the trees", as they say....So we'll stick together & root out the weeds to let the sunlight in again. Focusing on our blessings is like removing those negative weeds.

[Agiledog]

Rosanne Rosanna Danna of Saturday Night Live fame, upon observing the litany of things life throws at us, said “It’s always something”. Ain’t it so! What can we do? Just hang in there, keep on pushing back. Best to you,

Bud

[DaveCll]

Did you have an IDH1 mutation when you had the CLL?

Good luck I hope everything goes well

Dave

[keepfit123 in reply to DaveCll]

Not sure what IDH1 is but probably not as diagnosed with CLL in 2005 and only treated with FCR in 2012.

[Alex830]

So sorry, that is definitely not the news you want to get. My CLL strangely enough presents a lot like multiple myeloma, acute kidney failure, anemia and high calcium levels. BMB showed just CLL. Just in case, the MM Facebook page is very active and has great support and information, Multiple Myeloma Support Group (non profit)

[keepfit123 in reply to Alex830]

My calcium levels have been at the bottom end of specification ie 2,1 to 2,2

[DriedSeaweed]

Unfortunately, it is probably mostly bad luck.

I do wonder about further immune system issues even if CLL treatment “works”. I recall when I looked up my pre-treatment bone biopsy and related test results google results would bring up MDS. So, I wonder if bone marrow failure could be in the cards for me even if CLL treatment works. I am 37 now so if I am lucky enough to make it to age 78 I figure something is bound to go wrong by then. The fact that we are so fortunate to live so long something is bound to go wrong whether it is cancer or an unrelated health issue.

[ChattahoocheeBoy]

so very sorry to hear yet another major issue to deal with…seems to be overwhelming with multiple serious conditions! I empathize…..keep positive!

[keepfit123 in reply to ChattahoocheeBoy]

Many thanks