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Thread: Hello, new here, just diagnosed with lymphoma

  1. #21
    Moderator Top User
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    Glad your preliminary stuff is done and you have a few moments to relax! The port is more psychological than physical, I think. Did they give you some lidocaine ointment for the port? The idea is to smear a dab of the creme onto the port before you head in for your infusion (about an hour in advance). By they time they stick you with the needle, you won't even feel it. It's not that big of a deal if you forget, but it's a totally painless event if you numb things up first. I would smear the lidocaine on and then just cover it with a little square of plastic sandwich wrap to keep it off my clothing as I was driving in.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    1/2018: Remission continues (>7 years) Down to one checkup/year!

  2. #22
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    Oct 2018
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    Hey Folks,
    I still have a few tests to do before treatment begins. I have an electro-cardiogram, full body bone scan, a PET scan(I think), and a full body CT scan. It looks like these will be done next week. After that, treatment is to begin.

    I was wondering two things. First, is there anything I should do to prepare for treatment. Should I get extra help lined up for us? Should I get something lined up to help with household chores? How badly affected will I likely be? Will I be able to continue to help do things around here?

    Second, and most importantly, what other things can I do to try and get the best outcome from the upcoming treatments? Some thoughts that come to mind are changes in diet, exercise, some holistic stuff like yoga or acupuncture? Does anyone have some reputable sources or links that I can do some reading up on these things?

    Once again,
    thank you for all for the support and feedback so far.
    Mark
    10/18 - initial diagnosis lymphoma under left jaw

  3. #23
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    About the biggest physical effect you're likely to see is just progressively more severe tiredness. I continued to work full-time (from home) during my treatment. At the start I would get through most of a day, take a short nap in the afternoon, then finish the day out. As treatment continued, the naps got longer. It seems like the tiredness strikes a lot harder than "normal" sleepiness. When I had to take a nap during treatment, it was "head to the couch before you fall down..."

    You will likely notice some change in your appetite and taste perception. Foods that you really enjoy now may taste awful while in treatment - many folks avoid their favorite foods to prevent the development of distaste for them after treatment. Foods you didn't care for before may become preferred. For some, spicy foods really give them fits, but I actually liked spicy Thai and Chinese during treatment (still do, too....) You may also find that your stomach prefers to eat more frequent, smaller meals.

    Lay in a supply of laxatives! Your nurse (or folks here) can give you suggestions. I never had issues ever with nausea, but after the first couple of bouts with constipation, I learned to stay on top of hydration and medication for that - you have no idea of how awful you will feel if you plug up.

    Try to get exercise during treatment. I stayed quite active. Went on multiple hikes, did fairly strenuous yard work, built a treehouse - all during treatment. Even if you don't feel like it, a nice afternoon walk through the neighborhood will do you worlds of good.

    As far as the yoga, acupuncture and all that - if you enjoy doing yoga now, keep doing it! Just my opinion, but I'm not sure I'd try to start OTHER major lifestyle changes during treatment - just focus on eating healthy and getting through treatment; that will be enough of a project for you.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    1/2018: Remission continues (>7 years) Down to one checkup/year!

  4. #24
    Super Moderator Top User po18guy's Avatar
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    Yes, laxatives. There is also another way to help with regularity: sugar-free drinks. Anything that contains a sugar alcohol (i.e. sorbitol, mannitol, erythritol, etc.) as the sweetener. Sugar alcohols cause a concentration of water in the colon and help keep things moving.

  5. #25
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    Hello again folks,
    I had an appointment with my oncologist today. Mostly really good news. I am stage one and very early in that. There is no trace of cancer anywhere except in my lymph nodes under my left jaw. The only question now is how to treat it. The tumor is pretty large, grater than 50mm diameter. The doc say chemo is not as effective as radiation on the larger tumors. He has referred me to an oncologist that specializes in radiation treatments. So the actual course of treatment is undecided. On possible complication is I have 4 vertebrate in my neck fused with titanium. The doc says you cant hit titanium with radiation. I asked lots of questions today about the chemo. The one that bothers me most is that it hurts the heart. He said a 1-3% decrease with each treatment.

    A question I forgot to ask him, after the treatment is completed, can your heat recover? Can you work out and exercise and get that back? Does anyone know the answer to this?

    Thanks,
    Mark
    10/18 - initial diagnosis lymphoma under left jaw

  6. #26
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    I'm not certain about the interaction of radiation with titanium, except that I guess there would be concern for the radiation beam to reflect off metallic surfaces in an uncontrolled manner. That said, there are very focused radiation beams available like the Gamma Knife or Proton Beam (sounds like Buck Rogers, doesn't it?) that could possibly be used where you need high precision.'

    Regarding heart damage and chemo - there is one drug, Doxorubicin, that is a component of one of the common drug combinations called "R-CHOP." It is known to damage the heart, and there is actually a lifetime maximum dosage for that particular drug. However, there are many drugs and combinations that do NOT carry any particular risk of heart damage. There are also many biological drugs that don't really even count as "chemo" - they are antibodies, enzymes or other biological agents that don't kill cells in the same way as chemical drugs. Many of these have a lower toxicity profile. However, no drug of any sort is perfectly without risk for all people at all dosages. Almost anything can have side effects, either mild or serious, even life-threatening.

    If you need treatment beyond radiation, ask about immunotherapy drugs like Rituxan (rituximab). This can be given either in combination or as a single agent, and may be a good candidate to "mop up" any residual cancer after a course of radiation. You have many, many options.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    1/2018: Remission continues (>7 years) Down to one checkup/year!

  7. #27
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    Hi - Glad to hear your good news. My mom was just recently diagnosed with non Hodgkin’s lymphoma, DLBCL. Bone marrow biopsy is tomorrow with PET scan on the 28th. Only symptom thus far is 1 enlarged lypmnode on neck by thyroid. Nothing else. Blood work is all normal. Mark did your blood work comeback normal? Her LDH is eve normal.

  8. #28
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    Quote Originally Posted by Hcachat View Post
    Hi - Glad to hear your good news. My mom was just recently diagnosed with non Hodgkin’s lymphoma, DLBCL. Bone marrow biopsy is tomorrow with PET scan on the 28th. Only symptom thus far is 1 enlarged lypmnode on neck by thyroid. Nothing else. Blood work is all normal. Mark did your blood work comeback normal? Her LDH is eve normal.
    Hey,
    With the exception of the biopsy of the actual tumor, all of my test results came back normal.
    10/18 - initial diagnosis lymphoma under left jaw

 

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