New diagnosis of Waldenstroms Macroglobulinaemia

Hi Ally, thank you for your reply. It sounds as though things are improving for John. It is encouraging to know he is coping well with the B and R. I am hoping Loz will be okay with it as he has considerable stomach side effects from his previous radiotherapy. Hi is pretty fit for his age so we’re hopeful he will tolerate the treatment. It is definitely a roller coaster ride. I feel much better and encouraged after your comments. Thank you.

Although I am across the pond, Mike and I share similar lymphoma stories. I have been diagnosed with 4 cancers since 2008. After early relapse, my prognosis as of February 2009 was "extremely poor." That was before yet another relapse, a second lymphoma as well as a relapse of that, and a bone marrow cancer from years of treatment and radiation. In 2014-2015, I had all three cancers simultaneously. Both lymphomas were aggressive stage IV T-Cell Lymphomas, and the marrow cancer was in 23% of my marrow. 75+ tumours in my lymphatic system as well as lymphoma in my marrow, small intestine and spleen. The 4th (skin cancer) seems small potatoes in comparison. 

So, chin up! There are miraculous tales of recovery out there.

Hi, 

By now, Trearment would have finished.

Hope all has gone well.

I had Covid in 2020, had severe exhaustion and fatigue, plus shortness of breath afterwards, put down to long Covid.

Turns out, after collapsing couple of times, red cell count was right down to 83.

After few more tests was diagnosed with probable WM,  folliwing Bone marrow Biopsy, moved to QE at Birmingham for Plasma exchange , paraprotein level 107.

Finished B+R chemo 3 years ago.

Left me Neutropenia, cleared up.after 15 months, and  poly neuropathy, which is improving now.

Thete is a specific support group WMUK online and Social media.

https://www.wmuk.org.uk/

Loads of webinars and online zoom sessions  

MacMilllan were invaluable to me ,  guided me towards Attendance allowance , in early days during and after Chemo, struggled to look after myself.

Last September , suddenly realised I felt so much better  brighter, and almost back to my old self,  have plans to grow my own herbs, salads, etc, have slightly altered my diet, just to reduce highly processed foods.

Eat more fresh meat, veg  fruit, salads.

Take less chemicals, mind you, I do cook my own chips in Sunflower oil.

Presently age 78, 

Due to.Poly Neuropathy, affecting control of feet and hands, and balance , it was a while before safe to walk outside, last year stsrted short distances  gradually extending, just waiting for better weather .

Hope all is well with you.

Kind regards

Gordon 

Hello Gordon

Great to hear your positive story.

John is half way through his treatment, he has another 3 cycles of B + R chemo planned, dependent on a positive CT scan which he has next week and ongoing blood tests.

We’re eating healthier though I must admit that we do take advantage of John’s reduced nausea between treatments to try and increase calorie intake to maintain a healthy weight which works for him while I get heavier

We’re both looking forward to the Spring, fingers crossed for a good response to treatment. 

Thank you for your support 

Ally