Waldenstrom's Macroglobalinemia

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Waldenstrom's Macroglobalinemia

by Beverly_R on Wed Jun 16, 2004 12:00 AM

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I would love to talk to others who have Waldenstrom's. I know it is a rare form of NHL. I have completed the original chemo with Rituxan, Cytoxin and Fludarabine after which my immune system crashed and it took around 4 months before my bone marrow began working again. In the interim I had break through bleeding and many transfusions as well as platelet transfusions. I was also giving myself epogen and neupogen shots at home. I'm doing well now but it did take a long time. Also I suffer from time to time with bone pain. It would be great to communicate with someone else who has been through a similar experience. Thank you.

Waldenstroms Macroglobulinemia

by Belinda_R_1 on Wed Jun 23, 2004 12:00 AM

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Have you been in contact with the Leukemia and Lymphoma Society (LLS)? LLS is for people with leukemia, lymphoma, myeloma and other blood disorders. They have a program for patients called "First Connection" that connects newly diagnosed patients with someone with the same disease who has been in remission for over a year. WM is a rare disease so they may have difficulty finding someone for you, but you never know. Their database is nationwide. Also, find out if there is a Leukemia and Lymphoma Patient & Family Support Group near you. This is a great place to meet people who have the same or similar diagnosis and treatment as you, who can be a wonderful source of information and encouragement, and provide a listening ear to your circumstances. And no, I don't work for LLS, I am an oncology nurse and I was a support group facilitator for them for 3 years.

Waldenstrom's Macroglobalinemia

by Dorothyb on Wed Aug 18, 2004 12:00 AM

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My husband has Waldenstrom's Macroglobalinemia. He just finished treatment. The only way they could tell that he had NHL was through a bone marrow. He's doing very good right now and said they don't think they need to do a follow up bone marrow right now. maybe later. I'm nervous about that since it took a bone marrow to find it. How are you doing now? He's wondering what his prognosis is. Me too.

Waldenstrom's Macroglobalinemia

by Dorothyb on Wed Aug 18, 2004 12:00 AM

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How did you know your bone marrow began working again?

Waldenstrom's

by Beverly_R on Thu Aug 19, 2004 12:00 AM

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I am still getting transfusions but not as often. The bone marrow finally started to work after 4 months but it is going very slow for me. The doctor said that mine was a difficult case so I hope that your husband's bone marrow will start to work sooner than mine did. You asked how they suspected me of having Waldenstrom's. They discovered high protein counts in my blood and urine before I had a bone marrow biopsy (I've had three) - the first biopsy confirmed Waldenstrom's and the last one confirmed that I was in remission as there were no cancer cells. Keep in touch - I'll be happy to answer anything I can help you with. Beverly

Waldenstrom's

by Dorothyb on Sat Aug 21, 2004 12:00 AM

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Beverly, we are still in the discovery stage of Waldenstrom's and have not had a chance to discuss it with our doctor. However, he was treating my husband with the right Chemo combination, fortunately. How do you know that your bone marrow began working? My husband was receiving transfusions but doesn't appear to need any now. I'm assuming that's a very good sign. I have a feeling that the doctor thinks my husband is in remission because he's doing so well. We nearly lost him in January due to post surgical bleeding after a spleen removal. They didn't know he had Waldenstrom's at that time and didn't anticipate the massive bleeding. He pulled through and is doing well. We will see our Dr on Sept 6. We'll ask more then.

Waldenstrom's Macroglobulinemia

by Beverly_R on Mon Aug 23, 2004 12:00 AM

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Dorothy - I hope sometime soon you can make an appointment and talk to the doctor about your husband's condition. You should know where he's at. I know my bone marrow is starting to work (very slowly) because I needed a great many transfusions after my chemo because it wasn't working and now I'm feeling stronger and having longer times in between transfusions. I'm not all the way back yet but well on my way. I have had three bone marrow biopsies along the way. The first confirmed Waldenstrom's - the second was given to determine if I still had cancer cells, which at that time I did. Then the third was to determine if my bone marrow was starting to work again and also it confirmed the doctors statement that I was in remission (or cancer-free) I've read a lot of stuff about my disease and continue to do so so that I can make informed decisions should they become necessary. Good luck to you and your husband. Beverly

Waldonstroms

by Emsie1 on Sun Jan 23, 2005 12:00 AM

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Hi there, I hope you are well and don't mind me responding.. I am writing as you said you would like to speak to someone who has Waldonstroms. My father has lived with Waldonstrom's now for nearly 20 years!!! The longest living person I can find with this disease, which I hope gives hope to others. I wanted to let you know that the treatments available today are amazing and my dad has tried loads of them (He's going to London on Tuesday I believe they are going to give him his second Rituximab (Not sure about spelling!). They did only give him 4 years to live but with determination, positive thinking, treatment obviously and eating healthily I believe have contributed to him living so long. I am very lucky for him to have been around whilst I was growing up. Anyway enough of my waffleing on! If you would like to talk to him I've just got him introduced to computers and his own email account! So get in touch if you want to chat - I've also got him registered with IWMF which are a great support. Regards, Emma (UK)

Waldonstrom's

by Concernedson on Fri Feb 11, 2005 12:00 AM

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Hello Everyone, My father (74) has been diagnosed with WM 5 weeks ago. His regular doctor discovered his protein levels are elevated 4 years ago but was not to alarmed. Now, after biopsy and other test we have confirmation. His igM was at 3350 5 weeks ago. They performed a partial pherisis and lowered it to 1850 1 week later they started his Rituxan treatment (1 of 4) his IgM was at 3450. His 4th and final treatment was yesterday (2/10/05)and they informed us that his levels were up to 5000. They prescribed 2 50 mg tabs of Prednizone daily for 5 days. On Monday they are going to start a 3 day Fludarabine treatment followed by 2 days of Cytoxin injections. I've found this to be standard treatment and the doctor said everything will be fine. Thru research I find that to be very optimistic. My questons are for anyone who unfortunetly knows what I'm talking about. What is the Prednizone for? I know what it is, I just do not know what it is for in this case. Is an igM level of 5000 high for WM? does it give me a basis of progression? What are the realistic effects of treatment that could be expected, even though everyone reacts differently I think. What is the Quality of life factor? (This is very important to my Father). Please put it in a scale if you can. Thank you in advance to everyone and GOOD LUCK!

Waldenstrom's

by Beverly_R on Fri Feb 11, 2005 12:00 AM

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I wish I could give you better advice but I can only tell you from my experience. When I was diagnosed with WM I was given 5 days of Plasmapheresis and then immediately started on chemo consisting of Rituxan, Fludaribine and Cytoxin. The WM is in total remission but the Fludaribine wiped out my bone marrow along with my immune system. I still need blood transfusions and platelets from time to time. Now I may be a unique example as I was just diagnosed with lung cancer several weeks ago and am now contemplating surgery in around a month. The lung cancer is completely unrelated to the WM and all my thoughts and concentrations are now directed towards that. I wish your dad luck, hopefully he won't have the problems with the immune system that I had in which case the treatments should be successful and he will subsequently be WM free. I need all the prayers I can get to climb over this next mountain I have to climb. Barely one year from finishing chemo for WM I am having surgery for the lung cancer. God Bless - and if anyone cares to comment about all of this I will be happy to hear it. Beverly P.S. you asked about prednisone - I was also given prednisone in high doses and that it is for helping the immune system.
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