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Want to talk about Multiple Myeloma: Anyone else?
Asking anyone who is going thru this experience to share any pro's or con's of this disease. As of now I'm in MGUS, will find our next week if it has progress to Smoldering Myeloma.
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@tml That is great to hear! Have you gotten the shipment all set up for this week, yet? I had FedEx drop my next batch off this morning., and start on Thursday with the new round. As you saw, it takes a few extra days to get the results in on the specialized tests, so now you will be warned for next time! What has worked for me is to get my labwork done the day after the last dose of a round. The critical numbers my dr wants to look at are ready and he sets it all in motion to get the next round released. I am lucky because my labwork for that is done right at the cancer center, and he has the results in a half hour.
Don't look at it as wasted time, worrying. You found out what it will take to get the "ball rolling", so you are better prepared for next time.
Ginger
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1 ReactionSeriously, you’re doing great! You’ve had so many unexpected things tossed at you these past few months with a new diagnosis, new meds, new doctors, medical challenges you didn’t expect to face and abrupt life style changes! I’d say you’re handling this all quite well. But, increasing the positivity level while decreasing the worry level will help even more. ☺️.
Aw, I’m really sad for you with having to cancel that trip to Amsterdam! It sounds fabulous and I’m so sorry you have to miss it this year! But I still see this trip and others in your future. ☺️
Congrats on the NYT Sunday Puzzle. We no longer get a newspaper at our house and working puzzles online or in a book just don’t have the same feel for me. I love the folded paper in my lap and my favorite pen. But I end up with crossword puzzle books just to keep me in the loop. I am addicted to Wordle online though.
Ok, the 100 days of isolation isn’t really total isolation. You’ll pretty much follow what we did during the height of covid. You will need to be cautious with no hugging, smooching grandkids, avoiding crowds, wear a mask, sanitize your hands and surfaces, avoiding freshly tilled soil and no gardening. There will be some precautions with foods that are raw, especially and deli meats are taboo. There is no 3 second rule for dropping something on the floor, brushing off and eating it! But all of this will be addressed with your pre-transplant classes. It’s really not as challenging as it sounds.
My suggestion is to stay off the internet for some of these things about transplants.
Have you read any of Louise Penny’s Inspector Gamache series?
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2 ReactionsYesss! This is wonderful news! I’m happy and relieved for you!
We’ve all wasted time worrying, alas, it’s a trait of us mere mortals. ☺️
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1 ReactionWell the myeloma labs were posted and there is some good news. Numbers are down so hoping with a few more months perhaps another remission opportunity! Yes worrying was wasted!!!
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2 ReactionsSeems what was sent was okay so I should be getting it by Friday. I wasn’t certain what they needed and the myeloma tests are sent to Mayo to process which adds to the time.
I am reading spy novels now although like to read series so the next one is waiting but have finished all the ones in my queue so guess will have to find more or another topic.
A bit sad as got the notice for the bike/barge Amsterdam tulip trip I booked in January 2020 and finally cancelled. Sigh! Fine before I knew I had this but always hoped somehow we could still take! Since so much myeloma damage in the past 4 months, cannot even bike so just as well.
Hoping for some good numbers when those tests come back. Guess I have not really faced up to the actual reality of the myeloma. I know I need to be more positive and try to focus elsewhere but so hard for me. Did the NYT Sunday cross word puzzle! That took a few days! Have yet to try and paint or journal.
That is why I retired later than I should have as it filled up my time and mind!
I guess I did worry for nothing as it did not come down to the wire as I thought it might!!!
I was reading up on transplants again and saw the 100 days of isolation to recover one ‘s immune system!
Thank you for you response
Judy
@jam5 My oncologist told me just last week we will "play it by ear". I received Pfizer vaccines 1/23/21 and 2/14/21, boosted with full dose Pfizer 8/19/21, and Evusheld on 2/17/22. He feels we are doing all we can. He also encouraged me to consider my health when moving about this crazy world, and decide what will be best for me. I am actively on chemo for my mm, plus additional health issues.
Masking up, hand washing, avoiding large crowds, keeping stress levels low are key on my list. While the FDA will provide guidelines, I agree with @loribmt that your medical team, who knows you best, will be the best source to help you make a decision.
Ginger
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1 ReactionHa! Yes! Moving to Florida from Iowa has you heading in the right direction to avoid those long, painful winters.😂
You’re not alone in the confusion about the booster recommendations for people with compromised immune systems. I think there’s always going to be a mystery for any of us who have an immune system that isn’t as robust as our ‘factor installed’ version. We’re at a distinct disadvantage for not knowing how our bodies will react to something even as minor as a common cold. So then toss in this unpredictable and constantly mutating Covid virus and no wonder we’re confused. We all want protection and have no idea how many shots it will take or even if they will work for us on some level.
There’s a lot of unknowns yet about the effectiveness of vaccines on immunocompromised patients and it’s an area that requires more research and remains an evolving field.
In my opinion, since your husband has already had 4 doses of the Moderna vaccine and the Evusheld, I’d really talk to his oncologist before proceeding with any more. Since he had Evusheld it won’t pay to have a titer test as he’d likely show he has some antibodies. The problem is that there’s more to the immune systerm’s reaction than a number count on the titer. There is also the action of the T and B cells which might have some level of underlying activity. So I guess until we have better answers it’s still up to us to avoid infections by masking up, hand sanitizing, avoiding crowds, etc.. It’s a frustration, for sure! I think we’re all tired of the lack of normalcy.
Have you talked to your or your husband physician about another booster?
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1 ReactionI wasn't clear about the move. It's to Florida. Makes more sense, right? Thanks for sharing you reply.