New to Waldenstroms

daisygirl113

Hi all… I’m new to the board today. I was told I have Waldenstroms today, though the final report on staging will not be available until Thursday. I was feeling okay about it when I left the office, but now am crashing. My doctor said he wants to give me monoclonal therapy every week for four weeks (I think it’s Rituximab/Rituxan). Didn’t sound too bad when he told me, but then I looked it up. Yikes the side effects! I have a million questions about the treatment, but mainly I’m concerned because a) I watch my grandchildren twice a week all day (5,3,1), and b) my son is getting married over Labor Day and I’m wondering how I will feel and vainly, look. If anyone has anything they can tell me, I’d be very grateful to hear your stories and recommendations (supplements, eating, side effects, energy levels, etc). Thanks!!

po18guy

Sorry to hear this. Best to learn about the condition, as knowledge is power. Here is an information sheet from the Leukemia and Lymphoma Society: https://www.lls.org/sites/default/files/2022-01/FS20_Waldenstrom_1_22rev.pdf

Look at the potential treatment options and you will see that there are many. So, do not become disappointed if one particular therapy is not as effective as hoped.

Waldenström's is slow growing and, although not "currently" curable, it is a chronic condition that you simply live with. Chronic = time. Time is a blessing, as new drugs and therapies are in the pipeline and steady progress is being made. Many cases have no symptoms and to get you beneath symptomatic level would seem to be the goal. If it is producing no symptoms and can be made stable, how would you know that you have it?

I would hope that you are being seen at an NCI designated comprehensive cancer center, as they are leading edge and can provide you with the best possible outcome. If you are not, or don't know, find the nearest center here: https://www.cancer.gov/research/infrastructure/cancer-centers/find

Another consideration: clinical trials. There are many clinical trials in progress and more arriving. I have been in four trials so far and I highly recommend then, as that is the only way that progress is made. https://www.clinicaltrials.gov/ct2/results?cond=Waldenstrom+Macroglobulinemia&term=&cntry=&state=&city=&dist=

Oh, as to side effects, look up the side effects of aspirin and Tylenol! Regarding those side effects, I am currently receiving my 21st anti-cancer drug. Each one of them is "potentially" fatal, but the cancers I had were 100% fatal, so treat it we did. Not to worry, as any drug can be stopped or the dosage modified.

daisygirl113

https://csn.cancer.org/discussion/comment/1697366#Comment_1697366

Wow, thank you so much. I bookmarked everything and will get to reading. I am not at a comprehensive center. I might try to get one but have to wonder how far out they are scheduling. I’ll check. I’d love to hear their thoughts, but driving to one for treatment would be impossible unless I spent the night in which case I’d have to bring someone which would be very difficult. :( My oncologist has been practicing for over 30 years though and has excellent ratings. He mentioned getting a second opinion on treatment so maybe I could then have them talk and do my treatments here.

ShadyGuy

My treatment for FNHl began with 10 weekly Rituxan infusions All told I have had it 36 times in about 10 years. Much better than chemo. Don’t fear it. It is the least harmful to your body of the treatmrnts available. If you read the side effects of aspirin you would fear that too. Its a simple fact that Rituxan works - and you get yo keep your hair! Good luck!

po18guy

https://csn.cancer.org/discussion/comment/1697368#Comment_1697368

No matter how long an oncologist has been praticing, they are not hematologists - specialists in malignant blood disorders. You can see the amazing variety of options you have. "I" would do what it takes to consult at an NCI center. I am alive because I did so. In 2008.

daisygirl113

https://csn.cancer.org/discussion/comment/1697369#Comment_1697369

Thank you so much for the information and support. I feel so much better hearing that!

svence24

I’ve been dealing with LPL which Waldenstroms is derived from. 6 years ago I went through the Rituxan therapy. Side effects were mostly flu like symptoms and fatigue. It wired for about 5 years which is outstanding. Rest as much as you can. Research but don’t over analyze. Therapy has been proved so keep the faith. God bless.

Svence24