update and a few questions...

tryshz
tryshz Member Posts: 14
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I started maintenance Rituxan treatments on Dec. 28, 2016 - and the second treatment was February 22. When I saw my oncologist before the treatment I told him I have been experiencing pain in the areas where the lymphoma was not eliminated with the prior Rituxan treatments. I was surprised by this, as it has never happened before - and my doctor seemed surprised by it too.

I got a prescription and an appointment for a CAT scan - which happens this afternoon. Has anyone else experienced this? Is my mind just playing tricks on me? 

Is a real indifference to food part of this also? Have noticed that most things have no appeal to me - other than a bit of salad or cottage cheese and fruit. My husband is convinced I am starving to death - know I'm sure not, lol -  but going with eating what does appeal. Any others out there with this?

Thanks for any input!

 

Trish

Comments

  • PBL
    PBL Member Posts: 369 Member
    edited March 2017 #2
    Interesting...

    Hello Trish,

    I can't tell really, from what information you give here, but I suspect your last chemo treatment must have been around late October (was it R-CHOP? R-Benda?). If such is the case, I will say that it took me longer than that to begin seeing a resolution pattern in the food/appetite department. Actually, to tell the truth, things have still not gone back to normal. I guess that, as long as you're eating decent food - nutrient-wise - then there's nothing to worry about.

    Regarding pain, is that bone pain you're experiencing? What do you mean by "areas where the lymphoma was not eliminated"? Assuming those were bone areas, do you mean that there were still bone lesions, or do you mean that your Deauville score (SUV) was higher than 3?

    PBL

  • lindary
    lindary Member Posts: 711 Member
    #3
    eating

    Trish,

    I am best describe as a person who eats to live and I am married to a guy who lives to eat. For me eating has mostly been something I needed to do. I will admit there are days I could go all day without eating and not even thing about it. Then I got with with cancer.

    So in 2015 I did 6 cycles of R-Chop. When scans showed there was still some lymphoma I did 3 cycles of RICE. During this time I knew I HAD to eat regularly and my husband made sure that I had 3 meals a day. At least he tried to. One thing I had him do was by a case of nutritional drink. Chocolate of course. (We got the Walgreens brand to save a few bucks.) My personal daily requirements was my chocolate whip yougurt, the nutritional drink and a can of V-8.  My husband's goal was to get some fruit, protein and veggies into me.

    The thing to watch is your weight. I was overweight so losing some weight was not going to be a bad thing and my Dr agreed to a point. That was, I was allowed to lose up to 5 lbs with each chemo cycle. I knew from doing some reading that any drastic weight loss could be really bad. 

    Each time you go in for Rituxan they should be weighing you. I am sure they would say something to you if they have any concern about changes in your weight. So if you feel ok and your Dr is ok with your weight, don't worry. And tell your husband not to worry, or try to get him to not worry.

     

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited March 2017 #4
    PBL said:

    Interesting...

    Hello Trish,

    I can't tell really, from what information you give here, but I suspect your last chemo treatment must have been around late October (was it R-CHOP? R-Benda?). If such is the case, I will say that it took me longer than that to begin seeing a resolution pattern in the food/appetite department. Actually, to tell the truth, things have still not gone back to normal. I guess that, as long as you're eating decent food - nutrient-wise - then there's nothing to worry about.

    Regarding pain, is that bone pain you're experiencing? What do you mean by "areas where the lymphoma was not eliminated"? Assuming those were bone areas, do you mean that there were still bone lesions, or do you mean that your Deauville score (SUV) was higher than 3?

    PBL

    Perfect Questions

    Trish,

    PBL asked the perfect questions in his post.

    Rituxan is also perscribed as a treatment for Rheumatoid Arthritis (with no cancer involvement) that has not responded to lesser R. A. drugs, so it must have some ability to affect bone tissue.   Do not assume the worst !

    Give your doctor a call at your first convenience and talk this out with his RN or NP.  It took me a long time to regain appetite -- months.  You have been through the wringer, and while Rituxan is always described as "easier than most chemos," it is still unpleasant, harsh, and not feeling well will reduce most people's appetites, regardless of the type of pain.

    max

  • yesyes2
    yesyes2 Member Posts: 591
    #5
    Rituxan and RA

    I just finished the first of my 2 semi annual Rituxan treatments for RA.  Actually Max Rituxan does nothing for the bones of RA patients.  What it does do is, just like in Lymphoma, go after the CD20 in the B cells.  RA is a systemic inflammitory disease and Rituxan reduces the inflammation by decreasing the CD20.  Because of my history of Immune suppressed Lymphomas, Rituxan is the only option for treatment I have so thank God for Rituxan.

    Interestingly, people seem to complain about bone pain with Rituxan.  I also never did feel bone pain with the NueLasta(sp) injections.  Guess I have had way to many years dealing with cronic joint pain to notice.

     

     

  • tryshz
    tryshz Member Posts: 14
    edited March 2017 #6
    Had to share the good news!

    Had my CAT scan, and when I emailed my oncologist that it was done - he wrote me back and said he was going on vacation that same day for a week. So - I just resigned myself to waiting til he got back to find out what the scan found.

    Just got an email from my oncologist who took the time while on vacation to get copies of the CAT scans and sent them to me - along with a note that the scans looked great - NO signs of lymphoma - woo hoo!!! So whatever pain I have been feeling is from some other source, but not cancer! What a relief! I can now quit overthinklng everything and seeing bad news where there is none!

    Thanks much for all your input, you did a lot to improve my outlook even before I got that email - so appreciate having somewhere to come to vent and say what I am feeling at the time. Helps so much.

    Now...on with the maintenance Rituxan - treatment #3 coming up in mid-April.

    Laughing

  • tryshz
    tryshz Member Posts: 14
    edited March 2017 #7
    PBL said:

    Interesting...

    Hello Trish,

    I can't tell really, from what information you give here, but I suspect your last chemo treatment must have been around late October (was it R-CHOP? R-Benda?). If such is the case, I will say that it took me longer than that to begin seeing a resolution pattern in the food/appetite department. Actually, to tell the truth, things have still not gone back to normal. I guess that, as long as you're eating decent food - nutrient-wise - then there's nothing to worry about.

    Regarding pain, is that bone pain you're experiencing? What do you mean by "areas where the lymphoma was not eliminated"? Assuming those were bone areas, do you mean that there were still bone lesions, or do you mean that your Deauville score (SUV) was higher than 3?

    PBL

    wanted to thank you

    for your reply - made me realize I was a bit scant with the details. I did indeed complete my last course of treatments in October - but it was Rituxan only. Some background - I was first diagnosed in 2010 with splenic marginal zone nh lymphoma stage 4b. My spleen got as large as a football - but removing it was never really considered as an option. It did shove my other organs out of place, like my stomach, and I never could eat but a little ever since. I had 8 rounds of CVP-R, along with Neulasta and Aranesp - and was in remission in November of 2010. I went to the Massey Cancer Center, where I received Zevalin - this one time treatment kept me in remission for four years.  I have relapsed each year since - twice treated with 4 weeeks of Rituxan once a week - and now am on the two year maintenance plan with Rituxan.

    Decided to not worry about my eating, and now know that the pain I have been experiencing was not coming from lymphoma - so it joins the list of stuff I will learn to ignore. :-)

    Thanks for replying!

  • tryshz
    tryshz Member Posts: 14
    edited March 2017 #8
    lindary said:

    eating

    Trish,

    I am best describe as a person who eats to live and I am married to a guy who lives to eat. For me eating has mostly been something I needed to do. I will admit there are days I could go all day without eating and not even thing about it. Then I got with with cancer.

    So in 2015 I did 6 cycles of R-Chop. When scans showed there was still some lymphoma I did 3 cycles of RICE. During this time I knew I HAD to eat regularly and my husband made sure that I had 3 meals a day. At least he tried to. One thing I had him do was by a case of nutritional drink. Chocolate of course. (We got the Walgreens brand to save a few bucks.) My personal daily requirements was my chocolate whip yougurt, the nutritional drink and a can of V-8.  My husband's goal was to get some fruit, protein and veggies into me.

    The thing to watch is your weight. I was overweight so losing some weight was not going to be a bad thing and my Dr agreed to a point. That was, I was allowed to lose up to 5 lbs with each chemo cycle. I knew from doing some reading that any drastic weight loss could be really bad. 

    Each time you go in for Rituxan they should be weighing you. I am sure they would say something to you if they have any concern about changes in your weight. So if you feel ok and your Dr is ok with your weight, don't worry. And tell your husband not to worry, or try to get him to not worry.

     

     

    Thanks!

    Your answer was such an encouragement to me! You made me look back and think about my eating, putting it in perspective - I do get weighed every time I go to the oncologist - and have remained in the same 5-lb range for the last several years. The doctor is not worried about it, it's more my husband thinking I need to eat more. I am now trying to find that middle ground that will be ok with us both.

     

  • tryshz
    tryshz Member Posts: 14
    edited March 2017 #9
    yesyes2 said:

    Rituxan and RA

    I just finished the first of my 2 semi annual Rituxan treatments for RA.  Actually Max Rituxan does nothing for the bones of RA patients.  What it does do is, just like in Lymphoma, go after the CD20 in the B cells.  RA is a systemic inflammitory disease and Rituxan reduces the inflammation by decreasing the CD20.  Because of my history of Immune suppressed Lymphomas, Rituxan is the only option for treatment I have so thank God for Rituxan.

    Interestingly, people seem to complain about bone pain with Rituxan.  I also never did feel bone pain with the NueLasta(sp) injections.  Guess I have had way to many years dealing with cronic joint pain to notice.

     

     

    Thank you!

    Thanks for your reply! I had no idea that Rituxan was used to treat RA - and I wish you much success with it.

    I did have bone pain with Neulasta - glad to be done with the whole chemo-shot for this, shot for that regimen. All in all, I am doing just fine - just need to quit overthinking every little thing!

  • po18guy
    po18guy Member Posts: 1,509 Member
    edited March 2017 #10
    Scar tissue?

    As with all cancers, lymphoma can cause the formation of scar tissue. Normally, this may not be a problem, but if that scar tissue impinges upon nerve endings (or anywhere along the nerve), you will have occasional pain. What it produces, aside from pain, is "noise" - the suspicion that something sinister is occurring. This last time around, the lymphoma had invaded my ileum, which means that from now on I will occasionally notice a dull pain there.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #11
    yesyes2 said:

    Rituxan and RA

    I just finished the first of my 2 semi annual Rituxan treatments for RA.  Actually Max Rituxan does nothing for the bones of RA patients.  What it does do is, just like in Lymphoma, go after the CD20 in the B cells.  RA is a systemic inflammitory disease and Rituxan reduces the inflammation by decreasing the CD20.  Because of my history of Immune suppressed Lymphomas, Rituxan is the only option for treatment I have so thank God for Rituxan.

    Interestingly, people seem to complain about bone pain with Rituxan.  I also never did feel bone pain with the NueLasta(sp) injections.  Guess I have had way to many years dealing with cronic joint pain to notice.

     

     

    Thanks

    Thanks yes yes.

    I was aware that Rituxan and the other "mab" drugs (monoclonal anti-bodies) kill CD-20.  Of the five common forms of HL, only my type (NLPHL) expresses CD-20, which is why Rituxan is only used against NLPHL, and not the other "classical HLs ("cHL").  In other words, that is why I received R-ABVD, and not the more common ABVD for HL.

    What is a tad confusing is that R.A. is an inflammatory, non-malignant condition (I have a friend who has been on Rituxan for years for R.A.), but it is treated with a drug for a marker (CD-20) for a specific type of cancer cells.

    I read a bit regarding this and know that CD-20 is a normal occurence in the development of some B- stem cells, but only at certain stages of emergence. 

    What matters is that biochemists have figured out how this works against both diseases, a good thing. It does not have to be intuitive or clear to me to be of value.

    Even more odd is that I have read many people wrtie that Rituxan made their arthritis hurt much worse: that from an anti-arthritic drug !  Of course, R.A. and ostio-arthritis are differing conditions.

    I had pain about everywhere on chemo, but having been on six drugs at once (R-ABVD and neulasta), there was no telling which drug caused my pains, or why.  Neulasta did cause me extreme reactions first dose, but I have massive ostio-arthritis from my skull base to my lumbar), which is very susciptable to neulasta-induced pain. I am glad you have not experienced such. My subsequent doses had to be cut in half, and was not very problematic thereafter.  I asked the nurses if the other half of my shot could be donated, but they said no, it had to be discarded.  Ashamed, since one dose at my center at that time cost $7,000, and I knew other patients who were denied the drug by their insurance companies.  But, "declining stuff" is what insurance companies specialize in.

    max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #12
    po18guy said:

    Scar tissue?

    As with all cancers, lymphoma can cause the formation of scar tissue. Normally, this may not be a problem, but if that scar tissue impinges upon nerve endings (or anywhere along the nerve), you will have occasional pain. What it produces, aside from pain, is "noise" - the suspicion that something sinister is occurring. This last time around, the lymphoma had invaded my ileum, which means that from now on I will occasionally notice a dull pain there.

    S.T.

    Po and all,

    I think I mentioned to you once that my oncologists once made a comment to me on this subject. I asked "What becomes of these huge nodes after they are dead?" 

    He replied: "Many are sort of like burnt-out pecan shells. They become in effect a sort of scar tissue."  He is Ivy-trained and has 5 Board Certifications, so I have always taken him at his word.

    I don't know if the body generates new lymph nodes or not, but the "dead" ones, as one would suspect, are no longer functioning parts of the lymphatic system.  That suggests that patients even in CR have at least some, if not a lot, of lymphatic imparement for life.

    max

  • po18guy
    po18guy Member Posts: 1,509 Member
    #13
    Max Former Hodgkins Stage 3 said:

    S.T.

    Po and all,

    I think I mentioned to you once that my oncologists once made a comment to me on this subject. I asked "What becomes of these huge nodes after they are dead?" 

    He replied: "Many are sort of like burnt-out pecan shells. They become in effect a sort of scar tissue."  He is Ivy-trained and has 5 Board Certifications, so I have always taken him at his word.

    I don't know if the body generates new lymph nodes or not, but the "dead" ones, as one would suspect, are no longer functioning parts of the lymphatic system.  That suggests that patients even in CR have at least some, if not a lot, of lymphatic imparement for life.

    max

    Each case is unique

    Having had about 100 tumors total these past eight+ years, I wonder.... still we have hundreds of (some guess perhaps 1,000) nodes. The diference is when lymphoma becomes extra-nodal and leaves the lymphatic system. Then, it is much more likely to develop scar tissue where nerves would be involved.  

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