I am on watch and wait. 9 months so far. Second scan did not show any progress. Third scan scheduled for June. It is kinda weird knowing you have cancer but waiting for it to progress before starting treatment.

Hello Michael, I was on watch and wait for approx. 3 years. Just before Christmas I began with breathing problems. I found it difficult to walk from one room to another. Turns out one lung had to be drained, it was filled with fluid from the MCL. I was very weak and slept all day. After my lung was drained (twice ) it was literally a weight of my chest! I then had the option of a trial program of Zanubrutinib, Venetoclax tablets 2X daily and Obinotuzumab infusions. The other option was stem cell transplant. I opted for the trial program, which I am being told is working well on patients with MCL. My oncologist says I have had such an improvement in my lymphnodes and blood work he is positive I should go into remission for at least 2 years maybe longer, the trial is too new to know for sure how long. I am feeling practically normal now with a few exceptions of side effects from the meds but nothing I can't handle. You may be able to stay on watch and wait for ever ,but if not keep in mind there are many new trials and new medications being approved all the time. That is what gives me hope for the future. I hope your scan in June goes well. Peace and blessings to you.

Sorry - hit wrong button. I was diagnosed with Waldenstrom's Macroglobinemia in 2005 and was put on w/w. I had no symptoms except for the presence of WM cells in my bone marrow and some elevation of the blood numbers they watch for WM.

In the spring of '22, I started having fatigue, (a few) dizzy spells and headaches. My Oncologist did the bone marrow test and CT scans - and was looking at blood work quarterly all along. He said there were no troubling symptoms but the blood numbers indicated it was getting to be time to treat but not really necessary. I campaigned to begin treatment on the basis of my loss of quality of life.
He had me see a specialist who knows more about WM than he does - she agreed that there was no harm in going ahead with treatment.
Long story longer - I completed 6 monthly 3 day treatment cycles (Bendamustine/Rituxan) in late April. I am slowly getting my energy back and the headaches are intermittent. I was walking 20-30 mins. per day during treatment - now up to about an hour - this seems to make me feel better.
Each of these diseases is different and each of them affects patients in different ways. My prognosis is good and I'm getting my life back -

but to the point - I was on w/w for 17 yrs with quarterly blood work to monitor the WM, and I don't think treatment any earlier would have made any difference in my current prognosis.

Good Luck to you, Joe3

I have MCL, and am on watch and wait. Age 59, diagnosed 6 months ago, slow moving MCL, last scan in April showed no changes. Next scan in late July, I feel real good.... mostly neck pain that comes and goes, sometimes I feel a little lightheaded. No fatigue, no night sweats, keeping weight on is my main issue. I stopped drinking (mostly) and smoking weed (mostly) and everything is better. Made the right decision, chemo etc... cannot be good for the rest of my body...too much to do to let chemo or a slowwww moving cancer interrupt my plans. I will know when it is time. Don't poke the bear until it's got you cornered!!

Thanks. I am having some symptom like night; sweats and a little fatigue.