Hi my name is julie,
I was dxd with pv jak 2 pos in 2011 and last week was dxd with nhl after getting a ct scan and having a pet scan, it showed numerous hot spots in chest region and etc, this is a huge shock to me as its all happening so quick. Any advice on what to expect would be grt, i have to have a biopsy next week and then see the spec 5 days after it, so he can see what grade and stage i;m at, then will start chemo. Dont know what sort or how long they do it for, I;ve only just started to get my head around the pv issues, thanks julie
Julie, I am so sorry you have joined this club that nobody wishes they were in. I don't know what pv jak 2 pos is. I was diagnosed with fNHL in 2010 then after a 3 month remission I was surprised to have DLBC in 2011. The first chemo I had was R-CVP x 4. The second round was R-CHOP x 4 and 20 or 25 radiations (I can't remember exactly right now.) This is not a fun ride but it is all doable. I hope you have a good support system to help you through the treatments.
Hope all goes well with your onc visit. Take care, Fran
yes its a huge shock, pv is polcythemia vera ruba, anougher form of a blood cancer. So there worried as now i have non hogkins lyphoma as well, will no whats what in 2 weeks. How long are the chemo cycles? I have very good friends on the lls site in the mpn site, i live in albany western australia.I become a grandmother in late august so thats my focus. have;nt told my children yet, see what the biopsy says. thank you for your kind words ,take care julie
Julie, my sessions were on a 3 week cycle. The day of chemo it is about 5-8 hours on the first one because they had to slow down the R to kick up the benedryl I had a small reaction to the R. But every 3 weeks, 21 days, I would head back to the hospital for the next one. I never had to stay overnight during chemo. Most of my days were about 5 - 6 hours. Take a laptop or books and a friend to keep you company. The website I am sending you is a wonderful resource for information about NHL in it's many forms.
Take care and we will hang in there with you...............xo Fran
Julie, my daughter stayed with me on my chemo days. Mostly because I live an hour away from the hospital. My husband took great care of me all during treatment. I must admit I loved being relieved of the cooking. He is a much better cook than I am. Usually I felt like I had the flu for about 10 days then 11 days later time for another round. I feel fine now just fighting the exhaustion still. I have 3 low energy days and then a few high energy days. Life is good and I am praying your journey through all this goes well.
I'm recently diagnosed with NHL myself-February. I live in Pennsylvania, but came out to the famous Mayo clinic in Minnesota and staying with extended family.
My treatment is R-CHOP, but I also have a lot of cancer cells in the spinal fluid. It is a huge deal to have this diagnosis, and your life may seem like it is consumed with appointments and treatments. I have not had many side affects from the cancer. One of the important things to remember is to be optimistic. Mine is a stage 4, and my doctor tells me they will get me through thins."
thank you for repling, yes a big shock thats for sure, i have huge trouble with bone pain and tirdness. does'nt help that i have the polycythemia vera ruba as well, they said on my pet scan i look to be a stage 3, trying to find out how long the chemo sessions are and do you stay in hosp? my american friends rave about the mayo clinic and dr mesa, take care julie
firstly i would like to say a big thank you to you all for your support, had my biopsy results yest and after 3 weeks of telling me i had nhl, they said i dont and have anougher rare disease called sarcoidosis and it can run with the pv i have, so you can imagine our shock when told i did;nt have nhl. So i wish you all much health and happiness julie xo
hi, there-- I have NHL, follicular. Diagnosed and treated in 2005. I had R-CHOP 6 cycles (3 weeks apart), then 2 years of maintenance Rituxan. That kept me in remission for 7 years. Just relapsed. Looking at options. Interestingly, I was just also diagnosed with poycythemia. They do a phlebotomy, taking 1 unit of blood, due, at least in my case to high hemoglobin and hematocrit. It's not related to the NHL.
Along with R-CHOP, there is R-CVP, which is like R-CHOP without the hard on your heart drug, doxy-something (might also be called adriamycin, I"m not positive). Another regime the oncologists like these days is Bendamustine and Rituxan. There are a lot of clinical trials out there, too. THere are choices in treatments these days. Best to you, definitely, please keep us all posted.