I am 74 years old and was diagnosed with CLL about a year and a half ago. At the moment, I am in the test and watch phase.

Hi Everyone, Many of us are diagnosed with high-risk myeloma. The simple mention of high-risk triggers a mountain of questions and, more often than not, considerable anxiety. The notion of high-risk has a negative connotation and we tend to attach too much significance to it. Consequently we quickly spiral into doom and gloom. I was diagnosed with 1q gain (4 copies) combined with t(4;14). The prognosis for my cytogenetic profile is quite poor. Yet, 16 years after diagnosis, with 5 lines of treatment under my belt, including CAR T-cell therapy (Abecma) 3 years ago, I have responded well and today enjoy amazing quality of life. I dare say that I almost feel cured. Rather than focus negatively on the high-risk aspect of my cytogenetic profile, I just tried to reframe my mental stance to the treatments I received. I tried to look at them positively and, miraculously, enjoyed up to 3 years of response for every line. I interpreted that as a sign that my chances of survival were better than the statistics might suggest. By shifting to a positive perspective I empowered myself to just accept the situation and move forward confidently with hope. I would be keen to know how others in the community rise to the challenge of a high risk cytogenetic profile and whether they allow the poor prognosis to weigh on their minds and undermine their wellbeing and perhaps affect decisions. What has been your response to the high-risk diagnosis? What challenges did you manage to overcome? How did the prognosis affect your outlook? How do you perceive your outcome today? Thank you for your thoughts!

Dr. Wants me to have an ASCT. I have read a lot of negative reviews on this procedure. Can I recover and go back to work in 30 days? I’m deployment on the Border it’s hard to be off of work that long. I have alredy had test to see if my body can handle this procedure. I also had a Double by/pass 2.5 years ago and had two stents out in last year. Had two sternum. Wires removed. Was on Revlemid 25Mg and DEX for 2 years Now just on 15 MG of Revlemid. Does this increase life? Thank you MSG Espitia

There are many alternatives to traditional western treatments that I have read about, none of which seem to provide real solutions. The best one can do is stay as healthy as possible, as happy as possible, and as optimistic as possible. I'm now trying our intravenous Vit C. Has anyone tried this?

Hey y'all! This is my first post on this platform. I'm 41 YO with High Risk CLL with complex karyotype, specifically the dreaded TP53 mutation. Sound effects Dun dunn duuun. My husband,who travels for work, and I have a busy 9 year old who is the best kid -fun, kind, helpful, supportive, and silly. I just started Calquence (acalabrutinib) and have been at full dose about a week and a the half. So far overall I'm feeling much better and labs are looking like they're moving in the right direction. The problem is I wake up with these awful headaches, like I can't see straight. I'm working hard to stay hydrated which often means waking up around 3-5 am to use the bathroom and the headache has already started. Caffeine is recommended and helps once I'm up for the day, but I can't take it for my middle of the night wake ups. The headaches make it really difficult to get moving in the morning to be present for my kiddo, so I'm testing out new morning routines for that. Any suggestions for the headaches that won't keep me from getting back to sleep? Any morning routines that have worked well for anyone else? Thanks!

I just joined this group after seeing an email that said to share what helps you because it might help someone else...so here I am to share what helps me most! I have a very active brain and I found after my diagnosis and even now, 2+ years in, I still spend a lot of time thinking about MM especially when I wake in the morning. My tip is: audio books! This has helped me tremendously! I have always been an avid reader but at the beginning of this journey I found it very hard to focus on a book and tried audio books and got hooked. I never thought I'd be a listener but now I am. It's a great way to take your brain away from ruminating and you can start up your book at any time, anywhere! Give it a try, it's great medicine!

I am curious to hear if anyone has had the serious muscle and joint pain and weakness on V. It has been terrible for me. I've gone from a very active, outdoor, energetic woman to one who has fallen several times, can barely climb one set of stairs, painful to kneel down or get up from the ground. This started at 3 months in and has continued even after being off the drug for 6 months. My Oncologist tells me that often these side affects don't go away ever. I live in the country, have raised horses for years, busy with yard work, a swimmer until taking the drug. Any suggestions other than light exercise? Since this problem started, I have actually fallen and fractured my kneecap because I have lost so much strength in my legs. This has actually changed my life in very unpleasant way. I am doing OK with the CLL, was first diagnosed in 2016. Only a couple of bad times when the WBC's got really low. Just wondering why they didn't mention this side affect when I started the drug and if anyone has heard if they have found a solution for this. I read the suggestions but no one seemed to have had the reaction I have had to taking V.

I’m here to share just a tiny little something that I have found to improve my outlook, attitude and so, I guess, mental health. It may sound silly, but it has helped me and if it helps someone else, I’ll go for it. When I’m having a good day (we know those come and go) I focus intently on something and I say to myself, “WoW, I got up, got dressed, got to a doctor appointment, did a whole bunch of errands, and I feel really well!!! Remember, when I was in a wheelchair? On a walker? An incoherent post-transplant blob?! Hold onto this day, these moments!!!” This kind of self-talk really reminds me how well treatment has gone and that every single day is a miracle. I need to remind myself and stay positive. Good luck, everyone. You are not alone. Remind yourself.

My dentist doesn’t know about MDS. How can I help him learn what he should know?

I have elevated bilirubin 4.0

A friend sent me this article regarding Revlimid and how it is priced. It is an interesting as well as maddening read: https://www.propublica.org/article/revlimid-price-cancer-celgene-drugs-fda-multiple-myeloma

“If you could share one tip for coping, what would it be?” Let's start the conversation. Remember that what you share may help others!