Kappa/Lambda now 75, PET scan then likely I-VRD for 4 mo

I know renal failure is one of the crab criteria that is considered multiple myeloma despite blood levels. I know other things can cause it too. Do you have a myeloma specialist? I suggest one if not. All the best.

Oh gosh, Kay. I’m sorry to hear things have progressed to the point of needing treatment. I’ll talk about chemo in a minute. But what caught my attention first, however, is that you’re concerned about alienating your friends and family by asking for support. From experience, I can tell you asking for help is one of the hardest, most contrite acts of humiliation and vulnerability you’ll ever have to do. However, I was humbled by the amount of dedication from friends and strangers along with the steadfast care from my husband. I know your friends and hubby will be the same! Think of all the times you’ve jumped to the rescue of friends or offered to help them. (You even do that here in Connect!) You didn’t think twice about it! They will be the same for you. ‘Doing for you’ is a means to reciprocate for your generosity.

As for chemo, if you’re having 4 cycles over 4 months there will be different phases during the month. Roller coaster of ‘feels’. Week one of chemo, you may not feel much difference the first few days, though there may be nausea. Your oncology team will make sure you’re well covered in that department. Ask if they don’t offer, ask! Anti-nausea meds are helpful.
By week two, you’ll feel increasing fatigue as blood numbers drop, maybe some nausea, possible mouth sores and intestinal issues. What helped me avoid the worst was making sure to eat plain greek yogurt daily with a teaspoon of ground flax daily (a little jam to offset the bland) but no honey right now. (Or to make it easy, grab some Activia yogurt)

There is a period where all blood cell levels will be low, with profound fatigue like you have the flu. The nadir period or neutropenia. (In my experience, even my mental attitude was as low as my neutrophils) But, take heart, because the period lasts for only couple of days until the blood numbers, especially the neutrophils start to recharge. After that you steadily regain strength, stamina and attitude! Just in time for the next round. ☺️

The goal for you is to reduce the level of cancer cells to the lowest point. At which time you’ll have cells harvested and preserved for your stem cell recovery procedure. You’ll receive a pre-conditioning regimen to cleanse your marrow of any remaining cancer cells and to give a nice squeaky clean environment for your preserved cells to being their journey of recovery for your body. Because they are your own cells, there is no concern for rejection. They’ll engraft in your marrow in 10 to 20 days, set up housekeeping and start you on the road to recovery.

What is the timeline on this, Kay? Will this be dependent on the results of the PET scan and labs in 7 weeks?

@kayabbott Oh I’m so sorry to hear this. Lori’s response, especially about asking for help, is perfect. Your friends will be grateful for the opportunity to help out. We all need help at one time or another.
Hugs. May your path be gentle.

@loribmt Thank you and others for the wonderful sharing of your experiences. Once I pass through the belly of the beast (OK, not a great analogy for chemo) then I hope to share mine as well. My PET and bloodwork is March 9th because my MM specialist wanted to make sure the K and other numbers were not false positives. I have no CRAB symptoms, but my BMB last summer had +16% deranged cells and an SMM or MM diagnosis. I am also IgA Kappa SMM and have the 1q21 mutation that puts me at higher risk. I suspect that the I-VRD will proceed, sometime after the PET. The yogurt and flax are great suggestions. I'm freezing soups and such now. Some of my friends will be there, but others not. My husband is on radiation/hormone for prostate cancer that has spread; only a few have asked how he is doing, and no one has asked me how I am. One said "I guess you will get to find out what it is like when a spouse dies"; she has a bad mean streak. We do get to find out who is there for us. Hubby is almost through treatment so he will be there with hugs (and cleaning bathrooms...laundry...).

You will sort out these friends out of your radius. They suck up your energy. I am sending you my best wishes and prayers ♥️with a warm hug.

@kayabbott ohh my ‘lanta, Kay. @mascot summed it up in their response…”You will sort these friends out of your radius.” Truth. I found out who my true friends were too, and hadn’t even asked them for help. The true peeps will be there for you!

Gosh, I’m sorry to hear your husband is going through his own medical odyssey. When it rains it pours or whatever the old saw is.
I know you appreciate information so here is the transplantation tutorial from Mayo. Follow for Autologous transplant. There’s a ton of info on here for nutrition, caregivers, infection control, that type of thing. https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/
And please know that you are NEVER alone here in Connect. I’m here for you anytime along with so many of us for moral support, info, a sounding board, whatever you need! You can PM also if you feel the need.

If I may, try not to focus on what’s ahead. It’s fine to prep meals, slowly get the house ready, etc.. But don’t make this your sole focal point. Keep living and enjoying each day. You’ll get through the chemo and transplant just as you do any illness…one day at a time. Memory dulls the worst of it and you simply move forward. Let me know what I can do for you…