Hello to everybody

[koala]

Warm hello to everybody affected by this big issue and my best wishes for the best outcome possible. A little bit about myself: Middle age male diagnosed with lymphoma at the beginning of 2015. Did: ultrasounds, needle biopsy, neck surgery biopsy. (I so much wished I had said no to that) PET scan Bone marrow (positive) Diagnosed as stage 4a, grade 3. The problem was found pretty much by accident as no clear symptoms were present. Prior to this issue I enjoyed a better than average health, no medication, no broken bones, etc. Both my parents are in good health. I was vegetarian for many years, no excesses and generally healthy life style. I have a pretty supportive family doctor and a generally nice and hard to reach specialist. This was a big shock and I'm beginning trying to make some sense of it. It seems that pretty much all prior things must be revisited and the process and resolution look both daunting and bleak. I am in a wait and watch period as symptoms seem to be mild or non existent at this phase. Based on both my reading and what my doctor said I'm expecting to go on a Ritaximob/ Bendamustine (hopefully not CHOP) treatment at one point. I see other doctors suggest first just Ritaximob but my doctor seems to want both. So far he presented some non-medical arguments in favor of both drugs being taken together. This is going to be a hard decision and discussion to have. My specialist has a lot of experience and he has a leadership position in one of Australia's top specialized institutions. At this point, after the initial I'm overwhelmed period I'm trying to gather good information about this situation.So far the information I gathered seems to point to some very sinister conclusions regarding cancer patients. Of course, there is hardly any second when I'm not thinking about this or not influenced by this. Any comments would be highly appreciated. Cheers, Koala

[little_stitcher]

Hi Koala, my husband was diagnosed with stage 4 follicular nhl in 2011. He was offered the option of being in a clinical trial of bendamustine/rituximab, and decided to join. He was given this(not rchop), and so far he's been doing really well. He had fairly mild side effects- occasional nausea and general fatigue. He was able to maintain a normal diet, and work full time (part time from home, part time in the office). And he didn't loose his hair. Obviously everyone is different, and you may react differently if you do have Bendamustine, but I have no hesitation in recommending it to you. He is coming up for 5 years post chemo next year, and is currently in training for the Ride to Conquer Cancer and also Around the Bay in a Day in October this year. I hope this has been encouraging, and I wish you all the best with whatever you decide. Emily

[koala]

Hi Emily, Thank you very much for your graceful message. That is certainly encouraging and I wish your husband to continue on this great path. I guess you are in Melbourne otherwise I would have like to connect. I guess your hubbie did not go into the R+B treatment right away but he might have gone through a wait and watch for symptoms phase. Based on my research so for Bendamustine has been used in treatments since the 70s so it's mind boggling to see it's considered experimental. After I was diagnosed, I pretty much gave up the healthy life style but I'm doing better now. Great to hear your husband is keeping an active lifestyle. I was always wondering what the cause of this problem is. Based on what I read, some chemicals and so called autoimmune diseases are considered suspect. I also understand it's caused or influenced by a genetic mutation. I asked my doctor to test for that but I have not gotten a reply yet. I guess the clear a picture we have, the better we could make life-saving decisions. Cheers and all the best, Koala

[little_stitcher]

Hi Koala, I'm glad I was able to encourage you. I am in Melbourne- whereabouts are you? Chris was at stage 4 when he was diagnosed, so there was no watch and wait- he was given B+R straight away. That's what the clinical trial was about; usually Bendamustine is given to people who had relapsed, this was trialling it to see if it was "not worse" (!!?!!?!?) than RCHOP as a treatment for the first appearence of NHL. It was definitely found to be that (I don't think Doctors would ever catergorically say one is better than the other, there are too many variables), and it's so exciting that it can now be prescribed! I hope you have a great day, Emily

[koala]

Hi Emily, Sorry for the delay in response. I'm located in Sydney. I talked to my doctor and so far my understanding is that Bendamustine is still not prescribed and considered experimental despite being used on patients in other countries since 1970. I got a letter from a study for this cancer and I don't know if it's a good idea to accept being part of the study. Do you know about the study? Cheers, Koala

[koala]

Hi Emily, I have not heard from you in a while. I hope your husband is doing great. I wish you all a very Happy New Year !!! Cheers, Koala

[little_stitcher]

Hi!!!! Good to hear from you! Sorry I haven't messaged you back for ages- I didn't see your message. My husband is doing spiffingly well- so much so that he 'accidently' rode around Port Philip Bay on Sunday (He was riding to Frankston with some mates, and they decided to take the long way home!) How are you? I hope you've been well. What happened with your treatment? Have a great New Year, I hope 2016 is a stellar year for you. Cheers and champagne bubbles, Emily