Hope you are all well.I was diagnosed with Waldenstrom's Macroglobumiea, Lymphoplasmacytic Lymphoma in November 2020.I have been having

[bridgeoverriverkwai]

Hope you are all well.

I was diagnosed with Waldenstrom's Macroglobumiea, Lymphoplasmacytic Lymphoma in November 2020.

I have been having regular blood tests which has shown that the cancerous cells have not increased and the haemoglobin levels are low but stable. I do not have any classic symptoms as yet.I am currently on a 'watch' & 'wait' Therefore I am being monitored to see when treatment may commence. Is there anyone who has this condition who is also on watch & wait.

What treatments are there for this condition?

[doc1947g]

On July 16th 2019 I had a bone marrow biopsy(VERY PAINFULL).Results: Lymphoma NH Marginal Zone in the Bone Marrow.

So I have been on 'Watch' & 'Wait'. Blood tests every 3 months.

On Jannuary 29th 2020 I had 12 Prostatic Biopsies.

Results: G(4+3=7) Grade 3. Unfavorable Intermediate Risk.

So I was given Lupron Depot (Hormonotherapy or ADT) and VMAT-RT 3Gy X 20 Fx = 60 Gy.

And now on 'Watch' & 'Wait': Blood Tests every 3 months.

[cdckcc]

My husband was diagnose with WM March of 2019. He started treatment in May due to his high viscosity. He did 6 months of Rituxam/Bendamustine. he was fortunate with almost no side effects and the treatment was successful in lowering his #'s. The #'s all remain good. I suggest you join the WM Facebook page. It is a wonderful source of information and support. Also, join the IMWF. It too is a great tool. WM is a very manageable cancer. Lastly, I do not know where you are located. We are in Atlanta. Make sure you are seeing a WM specialist. It is a rare disease and needs a specialist. There is a list on IMWF. Hope this helps

[bridgeoverriverkwai in reply to cdckcc]

Hi there,Thank you very much for your response. It was really helpful.

I hope your husband continues to make progress with his WM. It was encouraging to hear that the Rituximab/Bendamustine didn`t give your husband side effects.

I have undergone many blood tests and marrow biopsy. The blood results show that the para proteins (cancerous cells) have remained constant and not increased. The haemoglobin levels is also constant. The blood viscosity is satisfactory. Taking this into account the consultant for the time being keeping me on a `watch & wait`

Initially after my diagnosis I was offered the same treatment as your husband and this will be the case if my blood results should change for the worse.

Please could you tell me how old your husband is. I am and 60 year of age and live in Birmingham, UK. I will certainly go onto the WM facebook page. Would be grateful for your reply.

[cdckcc in reply to bridgeoverriverkwai]

He was 58 at diagnosis. He is doing great!

[bridgeoverriverkwai in reply to cdckcc]

So fantastic to hear your husband is doing well. My wife and I found it a shock when I was diagnosed. We are now trying to keep positive and feel better now that we have accepted the cancer diagnosis.

How did you & your husband feel when he was first diagnosed.

Please keep in touch.

Have a great day

[Nothing_but_books in reply to cdckcc]

IMWF? I can't find it searching. Do you have a link?