Non Hodgkin's Lymphoma- Watch & Wait Approach
I would like to meet others who were diagnosed with a lymphoma and are on watch and wait treatment.
I have been on a watch and wait lymphoma watch now for 2 1/2 years. I currently get blood work done every 6 months and a CT Scan once a year.
Has or is anyone else having the cancer monitored like this? Are there people who lived their whole life without ever getting treated for lymphoma?
Would love if we could share our progress on here.
Jackie
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Chronic Epstein barre causes it , I have it and I am brca 2 positive had full mastectomy and hysterectomy
Nope no one does nothing for me
@kittiekiernan Have you been examined and tested for this? If your primary dr will not refer you to a specialist, can you appeal to your insurance for help?
Ginger
@travelgirl This is my first post on this group. Last week i went to my new hematologist-oncologist. In Oct 2017 my oncologist told me I had MGUS, after a bone marrow biopsy, and had been monitoring it every three months. Last December she decided to wait for six months. Wrong thing to do. All my blood values went wonky. I also am Stage 3b kidney disease, and those values were off their normal, too. In the midst of all this, I moved to another state. My new h-o told me "I see you have low-grade Non-hodgkins Lymphoma for 2 years, so you've had a while to get used to this, and now these possible complications". I was so stunned I didn't tell him the other h-o hadn't told me that, ever. All I was ever told was MGUS. I have a bone marrow biopsy in 2 weeks, with a consult with new nephrologist next week; hoping to not repeat the kidney biopsy. Because of the complicated case of NHL + kidney issues, they have to look at everything. No drama from me, I want the facts.
Ginger
I know I have this from my chronic Epstein barre virus plus had breast cancer Barca 2 positive, have every symptom, I feel like I’m dying and NO one will test me for this
Hope you have many more years of W & W.
I was on W & W for a year and started treatment in July because nodes were getting larger. Treatment of Rituxin & bendamustine is not to bad. Nodes shrunk after first treatment.
I've been on watch and wait for four and one half years, with Non Hodgekins lymphoma, no treatments in five years.
@Ginene05 - Just curious, did you have 3 cycles of RCHOP or 4? The NCCN "guidlines' for stage 1 or 2 NHL is 3 cycles + radiation. But, since your tumor was removed, I assume your didn't have radiation. Im asking because Im in the same boat, having a NHL tumor removed from my large intestine with no metastasis, so nothing to radiate. Ive finished 3 cycles of RCHOP and consider my treatment done. My oncologist says one more cycle is necessary. Ugh!
Thank you Njnana, for describing your rash experience. Mine is suspicious as it just doesn't change, whatever I rub on it. I also thought ringworm when the cortisone cream had no effect, so I used an antifungal, no change. It is aboutvthevdize if a quarter. It gets redder after a shower or bath. I will go get it checked and let you all know.
If it wasn't for my swollen neck glands, that started last July, 2018, I would never have suspected anything out of the ordinary. I have never heard of Morphea, I will research it now.
Jackie, I read the news about your tooth. I hope it's improving, keep us posted.
Bridget
Please keep us posted on your tooth Jackie..