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Thread: Well O.K. here I go with chemo

  1. #41
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    Quote Originally Posted by simon_h View Post
    Indeed that day you wake up and don’t have to take a handful of tablets is a GREAT day!
    Yep, I'm praying for that one!

  2. #42
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    At the mid-point scan, all of my lumps/enlarged nodes were half or less of the size they'd been before treatment and doctor was satisfied with that. I'd had no idea what to expect, so was also satisfied!

    My post-treatment CT scan found that there were still a few small bits of lymphoma left. They were all in the same area which had been the worst affected in the first place. I was a little depressed about it, knowing I didn't have full remission. However, I also had an MRI of that same area which got delayed until 6 months after the end of treatment - and it couldn't find a thing! The write up was "no evidence of recurrent tumour or any lymphadenopathy". So the last bits continued to shrink for some time after treatment ended and ended up going away completely! That was fantastic for my state of mind!

    For the meds... Each cycle, I took pleasure in reducing the number of pills I had to take throughout the cycle. It was about 5 with breakfast and 3 with dinner the first days, but that would gradually decrease until a week after the treatment I'd (usually) be down to just the anti-viral and the antibiotic. (Sometimes I'd still be having heartburn for a couple more days, but not most months.) It was wonderful when I finally stopped the anti-virals, 2 months after my last treatment, and was down to NO PILLS.

  3. #43
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    Quote Originally Posted by pjs View Post
    At the mid-point scan, all of my lumps/enlarged nodes were half or less of the size they'd been before treatment and doctor was satisfied with that. I'd had no idea what to expect, so was also satisfied!

    My post-treatment CT scan found that there were still a few small bits of lymphoma left. They were all in the same area which had been the worst affected in the first place. I was a little depressed about it, knowing I didn't have full remission. However, I also had an MRI of that same area which got delayed until 6 months after the end of treatment - and it couldn't find a thing! The write up was "no evidence of recurrent tumour or any lymphadenopathy". So the last bits continued to shrink for some time after treatment ended and ended up going away completely! That was fantastic for my state of mind!

    For the meds... Each cycle, I took pleasure in reducing the number of pills I had to take throughout the cycle. It was about 5 with breakfast and 3 with dinner the first days, but that would gradually decrease until a week after the treatment I'd (usually) be down to just the anti-viral and the antibiotic. (Sometimes I'd still be having heartburn for a couple more days, but not most months.) It was wonderful when I finally stopped the anti-virals, 2 months after my last treatment, and was down to NO PILLS.
    Hi pjs,

    Your email is quite inspiring and I so appreciate it. It's encouraging to read about your journey because it is similar to mine and you are doing so well. The best thing about your recovery is that you are climbing mountains in Switzerland. I sure hope I can do as much when all of this is over. I heard that it takes about 30 months to get all the chemo drugs out of our system. Maybe that's why your own treatment kept working after your infusions ended. I hope your NED is permanent and all of this remains a hitch in an otherwise healthy life.

    The good news is that my lumps have shrunk quite a bit since my two first (and only) infusions. I'd say they are a little more than 3/4 gone, at least those that I can see and feel. I saw my hemo-onc this week and he was quite happy with the results. But since I'm two months away from my mid-point scan, I don't really know what is happening inside. Luckily, the further I am from my infusions the better my energy level. Next week is my second treatment: Rituxan + Bendamustine on Monday and Bendamustine only on Tuesday. The following three days I might me a little wobbly. Then back to life.

    The one pill that I have stopped taking - for now - is Allopurinol. It prevents the build-up of uric acid in the kidneys. The rest, I'm still taking and dreaming of better days. I do feel filthy inside. But at least, I'm not seated on a chair doing nothing and loosing time.

    As always, thanks so much pjs and have a great weekend.

  4. #44
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    That is wonderful that your lumps are all shrinking away! Great news!

    It sounds as though we had exactly the same regime - I had Bendamustine and Rituxin on THursday, and Benamustine only on Friday. As I mentioned on your other thread just now, I always felt fine on the following weekend, but faded on the MOnday after, for a few days. Then I'd start feeling incrementally better every day. Still got very tired some days, but if I rested when it hit, I'd be ok again the next day.

    I remember stopping allipurinol after the first cycle too.

    I Have no idea how long my remission will be, but I tell everyone it's going to be the longest one ever, and by the time the lymphoma comes back, there will be a cure.

    We're leaving on holidays this Friday - will be scuba diving and hiking in the mountains! I'm so thankful for my level of recovery - and I don't see any reason you shouldn't be able to go back to the things you love to do, too.

  5. #45
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    Quote Originally Posted by pjs View Post
    That is wonderful that your lumps are all shrinking away! Great news!

    It sounds as though we had exactly the same regime - I had Bendamustine and Rituxin on THursday, and Benamustine only on Friday. As I mentioned on your other thread just now, I always felt fine on the following weekend, but faded on the MOnday after, for a few days. Then I'd start feeling incrementally better every day. Still got very tired some days, but if I rested when it hit, I'd be ok again the next day.

    I remember stopping allipurinol after the first cycle too.

    I Have no idea how long my remission will be, but I tell everyone it's going to be the longest one ever, and by the time the lymphoma comes back, there will be a cure.

    We're leaving on holidays this Friday - will be scuba diving and hiking in the mountains! I'm so thankful for my level of recovery - and I don't see any reason you shouldn't be able to go back to the things you love to do, too.

    Hi pjs,

    The way your energy came back:

    "I always felt fine on the following weekend, but faded on the Monday after, for a few days. Then I'd start feeling incrementally better every day. Still got very tired some days, but if I rested when it hit, I'd be ok again the next day."

    is exactly how I am doing also. That's pretty much my pattern too. It's encouraging! Your so active today - back to normal really - it's an inspiration. There are so many articles on the after effects of cancer treatments on the Internet - all rather frightening - where they describe people weakened and exhausted for the rest of their lives. That's exactly what I DON'T WANT to happen to me. I'd rather be scuba diving and hicking!

    Once again pjs thanks for your help and have a great vacation. You deserve it!

  6. #46
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    Just finished Round 6 of RCHOP for a diagnosis similar to pjs--Follicular with a diffuse/aggressive component. Diagnosed this past July by accident and began chemo in August. Largest nodes were 2.2cm--but there were a LOT of them in mesentery, mediastinum, retroperitoneal, left shoulder. Like pjs, I was very active right up until my surprise diagnosis--climbing mountains here in WA, in Canada, South America. Sounds like I'll have a follow-up PET in January or February. My mid-point CT showed complete response, so I'm hopeful. Still, it's hard to keep those fears at bay.

    A lot of talk about work or not to work. I'm lucky that I had a choice, but I most definitely could have worked through round 4. Round five and six--not so sure. At least after the first seven days post-chemo. In fact, I'm one week post right now and just getting back to the 80% range. Fuzzy, dark, sleepy, everything smells like chemicals and vibrates. No nausea.

    Please don't hesitate to reach out if you think I can answer any questions.

    All the best,

    Brian
    6/2017 - Fell of a ladder. ER CT confirms no broken back. Incidental finding--ER Doc suggests I get enlarged lymph nodes in abdomen examined.
    7/2017 - Add'l CT to confirm lymphandopathy. Confirmed. "Innumerable" enlarged nodes up to 2.2cm in mesentery, retroperitoneal, mediastinum, SCV node. Suspected Lymphoma--but Sarcoidosis possible as my wife has this auto-immune condition. No lymphoma symptoms of any kind. All blood work is normal--including LDH. Feel fine.
    7/2017 - Biopsy confirms Lymphoma of Follicular center origin grades WHO 1-3a. Also some diffuse areas highly concerning for DLBCL.
    7/2017 - PET confirms Stage III. Bone marrow biopsy performed - negative. Remain Stage III.
    8/2017 - Begin RCHOP 21. Neuts drop to zero after treatment. Neulasta given and will be part of each treatment moving fwd. Neuts rebound.
    10/2017 - Mid point CT post round 3 reveals lymphandopathy is gone and treatment appears to be effective. RCHOP continues until November 30, 2017

  7. #47
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    Thanks for the good wishes for my trip! I wish everyone a happy holiday season too.

    I did not do much googling for a long time around my diagnosis. Maybe that explains why I didn't find this forum back then! The first time I heard the word "cancer", the doctor told me he thought I had a sarcoma. I was too scared to google and got my husband to do it for me and just report a few basics. By the time I had the right diagnosis I was feeling stronger and did google a bit, but I really only read the wikipedia page. Otherwise, I asked all my questions of the doctor. I didn't think I could face reading about people who weren't responding well or were feeling awful.

    After my first treatment, I googled "neutropenia" and got myself scared, but it was probably ok that I did since it made me really, really careful for the rest of the time I was being treated. ANd later I googled FLIPI and so on, but I tried to stick to fact-based sites. I did look up the side effects of Rituximab as a maintenance therapy and it didn't alarm me too much. I"ll be glad to finish with it (one treatment in December, then 2 more and I should be done in June).

    Brian, glad to hear that you've had such a good response so far. Hope your recovery from this (final?) round continues rapidly so you're feeling much better very soon!

  8. #48
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    Thanks, pjs. Yes, last round! Your story is very inspiring as we are about the same age--I'm 55--and like staying active. I have a follow up with my onco/hemo on the 19th of this month and hope to have more details about the path forward, PET, etc. Pretty sure I'll be on Rituxan maintenance, but I'm going to insist on getting my port taken out. Any thoughts on getting Rituxan through a normal IV?

    Look forward to hearing about your trip!
    6/2017 - Fell of a ladder. ER CT confirms no broken back. Incidental finding--ER Doc suggests I get enlarged lymph nodes in abdomen examined.
    7/2017 - Add'l CT to confirm lymphandopathy. Confirmed. "Innumerable" enlarged nodes up to 2.2cm in mesentery, retroperitoneal, mediastinum, SCV node. Suspected Lymphoma--but Sarcoidosis possible as my wife has this auto-immune condition. No lymphoma symptoms of any kind. All blood work is normal--including LDH. Feel fine.
    7/2017 - Biopsy confirms Lymphoma of Follicular center origin grades WHO 1-3a. Also some diffuse areas highly concerning for DLBCL.
    7/2017 - PET confirms Stage III. Bone marrow biopsy performed - negative. Remain Stage III.
    8/2017 - Begin RCHOP 21. Neuts drop to zero after treatment. Neulasta given and will be part of each treatment moving fwd. Neuts rebound.
    10/2017 - Mid point CT post round 3 reveals lymphandopathy is gone and treatment appears to be effective. RCHOP continues until November 30, 2017

  9. #49
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    Mar 2017
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    IFOAL,

    Rituximab does not even require an IV, as it can be administered subcutaneously after the initial infusion. Subcutaneous injection has been approved a few months ago and is being deployed in the US, so you may need to ask your doctor if it is possible to get it at your hospital. However, it has been in use for longer in several other countries.

    After I completed R-CHOP in June 2016, I was started on sub-q Rituximab for my maintenance treatment. It's much less of a hassle - the injection itself is done over five minutes; you need to stick around for another half-hour just to check for any reaction, and then you're free to go. A great timesaver for one who wants to stay active!

    PBL

 

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