Waldenstroms and amyloidosis

Being married for 50 years is quite a wonderful and rare thing these days. That lifelong partnership takes on a new meaning when one of the members becomes critically ill. My husband and I will be married 48 years this next May and know first hand what you’re feeling with your husband’s illness.
We never know how strong we are until it’s the only option. I know it’s a trite expression, but taking things one day at a time is really the best approach. It allows us to stay positive for manageable amounts of time. It takes practice but it’s doable.
From what you’ve mentioned, I feel pretty confident that any of the 3 doctors you’ve consulted, considering that they are on staff at centers of excellence, would be very knowledgeable to treat your husband’s condition. At some point you have choose one doctor to get continuity of care and let them do the worrying so that you can reduce the stress over the illness and treatment. And considering your husband’s other health risks, making the journey to any of the 3 Mayo campuses might be more stress and physical burden than he wants to take on at this point. But if you are interested, here is a like to get the ball rolling. http://mayocl.in/1mtmR63
A referral isn’t necessary but it can be helpful to have a physician send in a referral along with patient records. But it all begins with a phone call to one of the 3 campuses on this link.

In all honesty, trying to get an appointment at a Mayo Clinic when your husband is already being seen at centers of excellence might be fruitless. Often when triaging appointments some of the factors they will use at Mayo would be redundancy of care. If you’re already getting the best care for a current health issue at a local facility the request for an appointment might be denied. So I would stick with the bird in the hand. You have great local doctors where you are. I don’t know what answer you’re looking for but when you have 3 doctors pretty much giving the same opinions on your husband’s condition, I’d pick the doctor that you feel you can work with and defer to his/her decisions. Waffling is just creating unnecessary stress for you.

If the doctor you trust the most feels it’s ok to watch and wait, then that’s based on results of the bloodwork, PET scans, statistics from years of treating this illness, and their firsthand knowledge of the disease.
Then do your best to relax and both of you enjoy life to its fullest. Try not to dwell on what the future might hold, appreciate the life you have now. Living with “what ifs” robs everyone of quality of life. I know your husband is exhausted and I’m sure you are too, with all the stress and worry. But try the Spoon Theory from my previous posting. It’s a great way to cope with the changes brought on by fatigue.

Worrying about getting Covid should be minor compared to controlling the advancement of the cancer if treatment is warranted. Avoiding the Covid virus is relatively easy and we shouldn’t live in fear just because our immune system isn’t up to full potential. I’m immunocompromised and don’t miss a beat out in the real world. I’m educated in how to avoid the disease and take precautions. I wear a mask always out in public without a blink of my eye. I earned the right to wear this mask and didn’t come this far in my journey to be defeated by a virus I can avoid. It’s an attitude your husband will have to take as well.

Sometimes as a caregiver, we get so wrapped up in concern.
I have to ask, is your husband as worried about all of this as you are?

I was diagnosed with WM July of this year. After treatments for kidney failure that included several plasma and protein apherisis treatments and one chemotherapy treatment I am currently being tested for amyloidosis. I had a CT scan and biopsy that came back positive for amyloid presence. Mayo and my local oncologist are looking at possible stem cell transplant and other options. The aspect that makes it difficult is I feel great now compared to three months ago when I was unable to care for myself. So a new adventure awaits????

Hello my name is Mariana and my children's father was diagnosed with Waldenstrom this month. He is only 39 years old and will turn 40 this June. I pretty much just want to know what I have to look forward to. Like what should I look for before I decide to take him to the hospital? What should I expect? What can I do to help? Mind you I am just the baby Momma. He does stay with me and my boys a lot because he has no wife nor do I have a husband so I help him with what I can. So far he has been having non stop nose bleeds and blood clots coming out all the time. He just started his chemo today. All in all I just want to know how I can help him. Any advice would greatly be appreciated. Thank you

Hi Marianna, welcome. You're so wise to reach out to other patients and caregivers familiar with Waldenstrom to get a picture of what you might suspect as the father of your beautiful children deals with the disease and treatments. Let me bring in some other members who can offer their experiences, tips and support like @jam5 @loribmt @puffwithfluff @ejrquast @patio29dadio @connie72 and others.

How did chemo go today? How is he feeling?

Reaching out for those with WM experience is extremely helpful for a rare lymphoma. I was diagnosed with WM in 2014 and very thankful to currently be asymptomatic. The International Waldenstrom’s Macroglobulinemia Foundation, IWMF, provides amazing support for patients and families, including a specific support group for younger patients. I happen to be an IWMF MN and WI support group leader.
Knowing the treatment he is receiving would be helpful for what he may experience. Thank you for your caregiving and support.

He was really nervous going in but he took it like a champ. He was only able to do half of his chemo because he was so low with his blood levels. I believe he will be getting another blood transfusion today. He didn't get sick after or anything he was just really weak probably because of the low blood levels. But in Jesus name we pray a miracle happens and maybe this nightmare disappears one day. What do you think about him getting a second opinion or going to a bigger city? We live in a small town. I am scared that he could be getting better treatment else where than here.

I’m just catching up with your post and my heart goes out to your children’s father. He’s very fortunate to have a good relationship with you as he’ll need a caregiver for a period of time.
Having a blood cancer is frighting, to say the least. But I’m glad he’s into treatment quickly. Chemo can be rough but so important to get started. Hopefully he’ll be able resume the meds when his blood numbers improve again after the blood transfusion. His nose bleeds are from the low blood platelet level, so his clotting time will be very slow. That should improve when he’s given a blood transfusion or a platelet infusion. I used to get those epic bleeds too. Now’s not the time to take up knife juggling! ☺️

Another opinion in treatment of a life altering illness is always a good idea. Often a larger, teaching hospital would be a good place to have that second consult. They may recommend the same treatment but then at least you’ll feel more confident in your local oncologist/hematologist.

Do you live near a larger city?

Because WM is a rare blood cancer, some oncologists have no experience with WM. I would strongly recommend consulting with a WM a specialist. The IWMF website has a list of WM specialists. If you have questions, I will be happy to assist you in locating a specialist. Eunice

Thank you for responding by the way. I am in Texas so Houston, San Antonio, Dallas those are not to far from us. I just can't get him to go seek a second opinion. He is still trying to hold onto his job and going through all this. That's another one of my concerns. What happens if he loses his job and can't pay for treatments? Or can they fire him for going to his Dr appts and not going to work. I worry about all that for him. We are not married so I can't put him on my insurance unless I marry him. Which I have thought of too. Because I really don't want my boys to be without a father. I am just going through all the scenarios of what if's.

Yes please that would be helpful. Thank you so much.