Waldenstroms and amyloidosis

He will have repeat labs next week First one after treatment was unchanged along with repeat PET CT scan. Planning to only monitor and not agree to any other treatment at thus time

I’m really curious why your husband is so reluctant to continue with treatment for his blood cancer. I know you’re both upset that he is now immunocompromised from the Rituximab. But the fact of the matter is, his blood cancer puts him into that category already. So if it’s suggested, wouldn’t it be better to continue with a treatment such as Rituximab, which inhibits the overly active B cells in his body and prevents any further progression of his disease. It wouldn’t add to his compromised immunity but potentially increases his prognosis as opposed to doing nothing.

Living with a compromised immune system doesn’t have to be disruptive. It’s a shock initially, of course, because there’s a change in our normalcy. But it’s mostly a matter of just being mindful when we’re out in the world. It shouldn’t impact the ability to enjoy and live life to its fullest. I’m one of those people and it hasn’t slowed me down one little bit.

What concerns does your husband have over continuing with treatment?

After receiving a chemo treatment last February, he had an infusion reaction that required a 3 day hospitalization
He then relevantly accepted Rituxan x 6 He did fairly well with a slight reaction following the first , but experienced fatigue
He is not convinced that he required any treatment, and never told about the B cell depletion resulting from Rituxan , especially during the pandemic
Consulted with another oncologist/ hematologist and was told he could just be monitored
He has wild type cardiac amyloidosis with a small component of AL and is in persistent AFib
Sometimes less is best

It’s not at all uncommon to have a reaction with the first rituxan infusion. I did too. It’s quickly halted with Benadryl and then generally the subsequent infusions are well tolerated.
If his oncologist said your husband can just be monitored then that’s good. Just as long as he keeps following through with appointments. This can be slow to develop but you don’t want to let it get out of control.

Just to refresh, if you look back at my Aug 9 reply you’ll see the explanation for why your husband was giving Rituximab and why it’s important to inhibit his B-cells even during a pandemic. Most of the time when an oncologist discusses meds, they won’t often go into the details of what happens and why it’s needed. I had substantial damage to my spine from a reaction with my bone marrow transplant. My B-cells attacked my spinal cord causing demyelination of the cord. Besides heavy steroids I was also given infusions of Rituximab at Mayo. At that time my transplant doctor and neurologist both explained in great detail why it was necessary to control the B-cells.

Yes they are extremely vital in our body’s immune defense but they can get out of control with a miscue, and attack our body instead of helping in an autoimmune attack. Your husband’s cancer from your initial explanation, is one caused by the overproduction of B-cells and they need to be held back. That takes precedence over a weakened immune system. And as I mentioned before, he already will have a weakened immune system from having a blood cancer and should be cautious with his cardiac amyloidosis and AFIB to avoid getting ill.
https://connect.mayoclinic.org/comment/624876/
I agree, sometime less is best! I hate taking meds but I’m living proof of better living through chemistry. ☺️

Wish your husband all the best from me on his labs next week. I’d like to keep up with how your husband is feeling. Will you let me know what he finds out?

Thank you so much for responding
We are both confused , upset and worried
We were told it is an indolent B cell lymphoma, which is why we are okay with monitoring
He did tolerate the Rituxan aside from initial one Fatigue was common

You’re so welcome. Honestly, I can completely empathize with what you’re going through. It’s really tough to have your world turned upside down with any diagnoses of cancer. That very word just conjures up the worst possible outcome. It’s human nature to think that way.

I had a very aggressive blood cancer 2 years ago, acute myeloid leukemia. My odds of survival were not good. Thankfully, chemo put me in remission, but I had a high risk for relapse within a year. A bone marrow transplant was my only hope of longevity.
Well, here I am, 2yrs 3 months later after my transplant. Alive, surviving and thriving!! Just had my checkup with my transplant doctor/oncologist/hematologist 2 days ago. We having conversations and joking about what I’m going to be doing 10 years from now! I’m in complete remission from AML. That’s why I say, I’m proof of better living through chemistry. We all hear the negative stories of Big Pharma but wow, we have to learn to trust the system sometimes. I would not be here today without these treatments and medications. Hah, and the immune system of 20 year old stranger!

So I really do share your concerns over what your husband is going through. It is frightening but he has a slow developing cancer. And it can be kept at bay for quite some time with a medication that inhibits the proliferation of those B-cells that cause his particular disease. Fatigue is just part of his life now, I’m afraid. Blood cancer will do that. So with or without the meds he will get tired. It’s the nature of the beast. He’ll have to pace himself during the day. There’s a great discussion started by a fellow mentor, @becsbuddy on the Spoon Theory~How to plan your day and conserve energy. https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/

As cancer patients we lose part of ourselves, the normalcy. It comes with a period of self mourning. But we have this tenacious ability to accept, adapt and move on. I hate the term ‘new normal’ but it’s exactly what happens when we grab hold of our current situation and learn what we need to do to survive the next step. Hope is what propels us forward and keeps us going.

What are some favorite things your husband likes to do?

It’s not at all uncommon to have a reaction with the first rituxan infusion. I did too. It’s quickly halted with Benadryl and then generally the subsequent infusions are well tolerated.
If his oncologist said your husband can just be monitored then that’s good. Just as long as he keeps following through with appointments. This can be slow to develop but you don’t want to let it get out of control.

Just to refresh, if you look back at my Aug 9 reply you’ll see the explanation for why your husband was giving Rituximab and why it’s important to inhibit his B-cells even during a pandemic. Most of the time when an oncologist discusses meds, they won’t often go into the details of what happens and why it’s needed. I had substantial damage to my spine from a reaction with my bone marrow transplant. My B-cells attacked my spinal cord causing demyelination of the cord. Besides heavy steroids I was also given infusions of Rituximab at Mayo. At that time my transplant doctor and neurologist both explained in great detail why it was necessary to control the B-cells.

Yes they are extremely vital in our body’s immune defense but they can get out of control with a miscue, and attack our body instead of helping in an autoimmune attack. Your husband’s cancer from your initial explanation, is one caused by the overproduction of B-cells and they need to be held back. That takes precedence over a weakened immune system. And as I mentioned before, he already will have a weakened immune system from having a blood cancer and should be cautious with his cardiac amyloidosis and AFIB to avoid getting ill.
https://connect.mayoclinic.org/comment/624876/
I agree, sometime less is best! I hate taking meds but I’m living proof of better living through chemistry. ☺️

Wish your husband all the best from me on his labs next week. I’d like to keep up with how your husband is feeling. Will you let me know what he finds out?

You’re so welcome. Honestly, I can completely empathize with what you’re going through. It’s really tough to have your world turned upside down with any diagnoses of cancer. That very word just conjures up the worst possible outcome. It’s human nature to think that way.

I had a very aggressive blood cancer 2 years ago, acute myeloid leukemia. My odds of survival were not good. Thankfully, chemo put me in remission, but I had a high risk for relapse within a year. A bone marrow transplant was my only hope of longevity.
Well, here I am, 2yrs 3 months later after my transplant. Alive, surviving and thriving!! Just had my checkup with my transplant doctor/oncologist/hematologist 2 days ago. We having conversations and joking about what I’m going to be doing 10 years from now! I’m in complete remission from AML. That’s why I say, I’m proof of better living through chemistry. We all hear the negative stories of Big Pharma but wow, we have to learn to trust the system sometimes. I would not be here today without these treatments and medications. Hah, and the immune system of 20 year old stranger!

So I really do share your concerns over what your husband is going through. It is frightening but he has a slow developing cancer. And it can be kept at bay for quite some time with a medication that inhibits the proliferation of those B-cells that cause his particular disease. Fatigue is just part of his life now, I’m afraid. Blood cancer will do that. So with or without the meds he will get tired. It’s the nature of the beast. He’ll have to pace himself during the day. There’s a great discussion started by a fellow mentor, @becsbuddy on the Spoon Theory~How to plan your day and conserve energy. https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/

As cancer patients we lose part of ourselves, the normalcy. It comes with a period of self mourning. But we have this tenacious ability to accept, adapt and move on. I hate the term ‘new normal’ but it’s exactly what happens when we grab hold of our current situation and learn what we need to do to survive the next step. Hope is what propels us forward and keeps us going.

What are some favorite things your husband likes to do?

We did see 3 hematologist/oncologist which I believe are at centers of excellence- Columbia NYC, JTCC Hackensack UMC, and Memorial Sloan K NYC
I hope that we can be assured he has been evaluated and diagnosed and treated properly
Last Hem/oncologist felt monitoring at this time is appropriate
We live in NJ The locations of Mayo Clinic’s for us is not close by, but I wonder if we even want to throw that option into the mix
You should be so proud of your medical accomplishments and your endurance
I wonder some days if I can endure
Thank you again for your chemical encouragement
It is so unsettling
Have a good evening