[californiagirl]

Hi Stacey, Thanks for the response. I’m headed for another BMB to see what’s going on. Counts continue to drop despite holding Revlimid. We’ll see!

[californiagirl]

Hi Will (not sure what happened to my original post, but if there are multiple posts, I apologize), I currently have COVID having gotten it from a recent bubble family gathering. My daughter and family recently returned from visiting in-laws for the first time and PCR tested twice before we went down to visit. We gathered on Saturday (PCR neg) and she mentioned she had a dry cough due to allergies. By Sunday she tested positive so we all packed up and left. Sunday my throat felt scratchy, Monday throat was scratchy but now with a slight cough (antigen neg), Tuesday coughing more but not a lot (antigen neg), Wednesday coughing a lot (antigen pos). Called my PCP and asked for Paxlovid which she prescribed along with Albuterol (just in case) and a strong cough syrup (which is what I really wanted). She wasn’t really hot on me starting Pax but if I wanted to it would be fine. I never felt like I couldn’t manage the COVID symptoms and she called my case mild. I never had lung issues or any severe symptoms. Thursday I was feeling a bit better, but my coughing had improved but still feeling lousy. He suggested I take the Pax since I was on Revlimid. Very encouraging, said it would make me feel better faster. I started the Pax. Friday my coughing was gone except for some sporadic fits, no fever, and feeling I had energy. I didn’t need to nap and actually accomplished quite a bit. Today, I feel pretty good. The downside to Pax is the nasty metallic taste in your mouth and the GI problems. Do I think the Pax helped me? Honestly, I think I was getting better on my own at the point when I started it. Maybe it did maybe it didn’t? In the end everyone got COVID. The grown children have it the worse and are taking the Pax and I don’t really think it helped them. The grandchildren are doing OK, and the hubby is OK if it wasn’t for the really raw sore throat. My younger grown daughter finally tested pos after 5 days and only complains of a dry throat and cough. Hope this helps! Stay healthy and safe.

[californiagirl]

Hi Nancy, Sorry I’m so late to add to this question. I’ve been on Revlimid (5 mg, everyday) since 2015 for 5Q as well. I had the same severe side effects as you but was able to stay on the medication w/o lowering the dose or stopping. Revlimid can cause bile salt malabsorption that responds to bile salt sequestrants that allowed me to continue treatment. I had an immediate response to the Revlimid within the first 2 weeks and have been in the low normal range since. I also had an immediate response to the bile salt sequestrants within one day. This past year I’ve noticed my RBCs slowly dropping and was anxious, but the MD didn’t seem to be. He kept telling me everything is in the normal range. I go see him in a week and I’m hoping that the tests will show it’s gone up. I remain active, golf 1-3 x/week, and keep up with the grandkids. I stay busy and try not to think about it. There are times when I get a little depressed, but I try to stay positive and live out each day the best I can. Best of luck to you.

[californiagirl]

Hi Bridgette: I was dx w/ 5Q del in 2015 when I was 58 and have been on Revlimid since late 2015. I was never transfusion dependent. The only problem I had was chronic diarrhea after starting it the first 6 months and the MD almost took me off of it until someone mentioned the use of Colestipol (used for bile salt malabsorption) and I have been good since. I’m on Revlimid 5 mg x 28 days. All counts are within low normal range. Except for feeling a little tired climbing 3+ flight of stairs (which I make myself climb at work), I feel great, golf, hike, walk, travel, garden, pull weeds (ugh) and try to stay active. I know there are people who have been on it for 10+ years. My first year was spent worrying and not wanting to make any decisions with my life, but I’ve learned to accept it and live my life the best way I can and do the things I want to do. Best of luck to you and everyone.

[californiagirl]

Hi Catherine: I was diagnosed with -5Q last year, but I figure I’ve had it at least 2 years. I am not transfusion dependent. I only became aware because I was going through my well checks and screening. I was anemic, had a bone marrow biopsy and the rest is history. I started on Revlimid 5 mg x 28 days. I take it every day. Initially I developed a red rash and took Benydryl which alleviated it. I saw changes in my blood values after 2 weeks and recently my blood values are all within normal range after 9 months. Initially my whites and platelets dropped, but then they started bouncing back after 6 weeks. I was worried that my numbers would tank and would need to take infection control precautions to protect myself, but they never dropped to that level; however, I was very careful anyways. Recently, I developed diarrhea to the point that it was affecting my QoL. My doc said it wasn’t Revlimid related, but he was wrong. Someone mentioned bile salt malabsorption due to Revlimid – I showed it to my doc and I was put on a therapeutic trial and never had an issue again after the first dose. If I didn’t have the issue with bile salt malabsorption I would say I have had very little problems with it. I work, golf, and continue to have good QoL. Thank God! Best of luck to you and your journey.

[californiagirl]

Here is the link to one of the articles for those interested in learning more about bile salt malabsorption.
http://www.bloodjournal.org/content/124/15/2467?sso-checked=true

[californiagirl]

Hi Lukacspat – I wish I didn’t go through this needless suffering these last 3 months. I was put on Colestipol on a trial basis and have been on it for the last 3 days and I have had NO problems. I feel like my old self again and am ready to return to the land of the living. I wish more docs knew about bile salt malabsorption and I’m disappointed that my own hematologist was not aware of the study or this side affect. I am also going to forward this information to the GI doc so he is aware of it to. THANK YOU THANK YOU!

[californiagirl]

Thanks for the info. I actually found information on the study online and plan on printing out the info and taking it to my GI and Med Onc and hoping they’ll do a therapeutic trial first before doing more testing. Did they test you for bile salt malabsorption first? Do you still have your gall bladder?

[californiagirl]

Thanks for the information lukacspat – wow, I’m hopeful! Can you provide me with more information about how they arrived to this conclusion? What type of tests, etc. I’ve been scoped and now will go for a CT to see if there is anything else going on- so far, everything checks out OK. I’m so tired of this – the quality of life has really taken a downturn. I’ve been reading about bile salt malabsorption and it sounds so much like my symptoms. I’ve also been reading about colestipol and the side effects as well – did you have any? Were you put on a therapeutic trial?

[californiagirl]

Hi Sherry, are your gastro side effects chronic? I’m still trying to figure out what sets my gastro system off and why after 6 months it started. Onc doc says it’s not related. Tell me more about your immunity booster and what type of “enzymes” are you referring to. Thanks for the information

[californiagirl]

I was diagnosed with 5q (hypocellular bone marrow) a year ago, although I think it had been going on for at least two years. I was started on Revlimid in October, 5 mg, every day. My Hb had dropped to just below 10 and my rbc was down to 2.95 before I started. Within 3 weeks my body responded and now I’m within normal range. My Hg is now 13.5. I do notice that my whites did not rise much, but I’m hovering at low normal, platelets are within mid-range when they used to run high normal. Overall my experience has been good. I did have various symptoms that come and go that the doc doesn’t attribute to the meds, but I never had them before (chest heaviness for one). Right now having gastro problems but again they say it has nothing to do with it. Never had body aches, just an initial rash that quickly resolve with Benydrl. Overall, I’m doing well. I still golf and climb 5 flights of steps. I thank God every day for my health and my body responding to the meds. Stay positive and active no matter how you feel.

[californiagirl]

Thanks for the advice. Right now I have low RBC,normal low WBC, and normal high platelets. I get hot flashes throughout the day/night, but doc says it’s not related and is probably hormonal. I get a little fatigued climbing long flights of steps or hills. I’m still pretty active, in fact, I feel better when I’m active than when I’m sitting still. I think I felt better before I knew I had it! If I never had a CBC I probably never would have found out until later when my hemoglobin would have dropped even lower. I was always too busy working than to find time to take care of myself. I’m waiting for an appointment at Stanford for a second opinion about watching/waiting vs starting on some kind of meds.

[californiagirl]

If you are currently on supportive care does that mean you are not taking any type of meds right now to help increase your numbers?

Ever since I found out I was anemic and before my diagnosis I focused so much attention on my numbers. My doc said don’t worry about the numbers but focus on how you feel, but it’s hard wondering if the little tick upward or downward is a sign of stability or another downward trend. Before my diagnosis I thought it might be b12 deficiency (321) and started taking a b complex supplement and it actually helped somewhat with some other symptoms I was having especially the “swooshing” noise in my ear, but it did not bring up my counts up too much. So after 3 months I decided to do the BMB. And here I am.

Now I’m trying to move forward and adjust to my life.

[californiagirl]

Hi Patricia, thanks for the information. While I was just diagnosed I think I’ve been un-diagnosed for at least a year. I chalked it up to “aging” My numbers have remained pretty stable for the last 6 months. My hemoglobin has been around 11, WBC 3.5 and RBC 3.2 +/- I feel pretty good overall and feel my best when I’m staying busy. I’m in between jobs right now (when I was diagnosed) so I’m debating about not working, working full-time, or working part-time. It sounds like you are fairly stable as well since you have been on watch/wait for several years. Are you still pretty active? How did you find out? – Colette

[californiagirl]

Hi, I’m new to this forum and just diagnosed with 5q- syndrome and on watch and wait. I’ve read so much that my head is spinning. I’m interested to know what everyone’s experience have been in the long run. Have many of you been able to continue working? What type of quality of life do I have to look forward to? Thanks.

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