Bob is cancer survivor

[bobbyd943]

Hi everyone, my name is Bob and I am a cancer survivor. I was diagnosed with NHL late 2013, underwent Chemotherapy (RCHOP) for 4 months followed by 3 weeks of daily radiation treatment. Cancer is still in remission and hope it stays that way. I do visit my Oncologist every six months for blood work and annually for CT scan. Have made it 3 years now and if I can reach the 5 year mark chances are good I will stay clean.

[Afleisch44]

Congrats, great seeing success stories. I was just diagnosed with Anaplastic Large Cell Lymphoma, had my bone marrow and blood work yesterday, PET soon to follow. I have been told odds are it will be 6 sessions of CHOP Chemo

[bobbyd943 in reply to Afleisch44]

Hi Afleisch44

I also had the bone marrow biopsy done and it actually turned out to be the more painful of all the tests. PET scans are not bad just time consuming as will have to wait for the radiation to travel throughout your body before they actually to the scan. Not sure if all hospitals are the same, but at UAB they put in a little room by myself because of the radiation, at least they turned the lights down low, easy to fall asleep. Good luck with the scan

[Afleisch44 in reply to bobbyd943]

The Bone marrow wasn't as bad as I was expecting but it was uncomfortable and achy today. I have had MRI's and CT's all with contrast and injections so I feel fine about that upcoming. Nice to hear from those in remissions. Take care

[Shar0n Volunteer]

Hi Bob - welcome to you. Congrats on being still in remission. I was diagnosed in 2014. I had the PET and two bone marrow samples which indicated I didn't need treatment yet. Still on watch and wait. Continued good health to you for 2017!

[laylalulu in reply to Shar0n]

Hi Sharon I was diagnosed in 2014 too and I'm on watch and waitit.I didn't have any follow up scans just bloodwork Every three months no second bone marrow biopsy either mmm I hope everything to be told is in the bloodwork he gets. I have my next appointment in February hoping to have lots of watch and wait 😊

[Shar0n Volunteer in reply to laylalulu]

Hi laylalulu, I think each oncologist has their own slightly different twist on the protocol for dealing with the illness in the early stages. To some extent we are each ploughing his/her own furrow through it all. When I was first diagnosed, I was totally reliant on my doctor and did what he told me to do without question. I had a PET scan to stage the illness and whether I would have chemo was dependent on the result of that. I was offered radiotherapy but by then I had read a lot of the research and decided that it wouldn't benefit me at that time. The blood tests and checkups are vital but I personally would not want frequent scanning as I don't see a benefit to me when all other things are going well. There is a lot of radiation involved, and while a scan can be necessary, too many of them just for staging are not good in my opinion. Good luck and continued improvement to you

[valderi]

Hi Bob RChop is the 4 month treatment that I've just had. I see the consultant at the end of the month for further news. It's great to hear of the success stories.

[wmay13241]

Bob - that is great that you have a CR following R-CHOP. In November 2011 my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. In 3 years she progressed after R-CHOP, bendamustine/rituximab, and Ibrutinib. She took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial and has been in complete remission for 9 months. Current clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission.

[C180ji]

That is brilliant news , let's hope 2017 keeps on rolling for all 🙏 😀

[bobbyd943]

Just finished my semi-annual visit to my Oncologist and everything is going well. This marks 3 years since my last treatment, and according to him the chance of relapse is getting smaller. I love days like this.

[R16728]

Some of you might like to hear I've been living with NHL since it was first discovered in a simple blood test in prep for apendicitis in 2008. I was 51/2 years in remission after chemo and recently passed the 2 years and 4 months on Zydelig. (idelalisib) I'm passing through a rough period just now, trying to figure out if my drug saviour is still working. My oncologist is forthcoming with "You made 10 years Dave, that's outstanding". My next option may be to try ibrutinib. It has recently been released for some lymphoma patients. One day at a time!