burkits (sp?) lymphoma - Lymphomas Message Board

hulkster79 · 06-09-2002, 11:30 PM

hi all. umm i am 22 yrs old, when i was younger i was treated for burkits (not sure if i spelled it right) lymphoma. i have to say i know nothing of this disease. i have had several other events since then of all varieties, such as a stroke and torn acl/mcl. i was wondering if i could get some info. or some links or something on this topic. by the way, i know there are some serious issues going on here, but i just wanted to lend some encouragement to anyone who needs it. after i got better, i went on to captain my high school hockey and lacrosse teams, and play some collegiate lacrosse as well. if any of you are in a tough situation, keep grinding it out and you can make it.
-j

Jay Tor · 06-10-2002, 01:56 PM

Hi Hulkster79:

I'm a parent of a child who was treated for a leukemia, somewhat different from Burkitt Lymphoma.

There were a few bone/muscle-related issues we had to deal with. Most were therapy related side-effects, esp. with prednisone and other immune-suppressants.

If you're interested in reading up on Burkitt Lymphoma, try the site below.
[url="http://www.nci.nih.gov/Search/results.aspx"]http://www.nci.nih.gov/Search/results.aspx[/url]

There's an online organization [ACOR] for cancer/post cancer patients/families where you might find someone who's experienced similar problems. This site also has groups of patients who had a bone marrow/peripheral blood stem cell transplant.

ACL/MCL - As far as I know [and I'm not an M.D.], most ACL/MCL injuries occur as a result of a specific type of lateral movement, but can be worsened if there is any osteoarthritis in the knee joint. This type of injury is more common in females than in males [because of differences in bone shape/curvature]. If you were/are on prednisone, your risk of osteoarthritis and osteoporosis is much higher compared with other people your age. But, it is reversible once you stop prednisone [and/or other immune-suppressant] therapy. You'll also need to supplement with calcium, magnesium and Vit D. Check with your doc [family or HEM/ONC] first.

You didn't mention whether you've had any blood sugar problems - again, usually because of prednisone therapy. If you haven't, ask your doc whether you can take any glucosamine/chondroitin supplements. They helped me when celecoxib didn't - the celecoxib just reduced the pain/inflammation, whereas the glucosamine/chondroitin actually helped repair the damaged tissue. Here's the clinical trial page on the NIH glucosamine/chondroitin supplement study for background information. This combination has already been tested in Europe with very good results, as per the German Commission E.
[url="http://clinicaltrials.gov/ct/gui/c/a2b/show/NCT00032890?order=1&JServSessionIdzone_c t=iofvdh4mn1"]http://clinicaltrials.gov/ct/gui/c/a2b/show/NCT00032890?order=1&JServSessionIdzone_c t=iofvdh4mn1[/url]

ACL article on MedLinePlus:
[url="http://wwwindex.nlm.nih.gov/cgi/htsearch?words=ACL&config=medplus%5Ffuzz y&method=and&format=builtin%2Dshort&rest rict=&spell=spell&x=14&y=8&search_type=A ll%20MEDLINEplus&WSSCheckFie"]http://wwwindex.nlm.nih.gov/cgi/htsearch?words=ACL&config=medplus%5Ffuzz y&method=and&format=builtin%2Dshort&rest rict=&spell=spell&x=14&y=8&search_type=A ll%20MEDLINEplus&WSSCheckFie[/url] ldName=words&action_spell=Check%20Spelli ng&WSSUserDictFileName=&WSSOptions=30387 2&WSSLanguage=24941

Stroke - Was this due to an embolism or a hemorrhage? Also, have you had any lymphedema? This also happens following the type of therapy you underwent. [You can look up each of these conditions on the MedLinePlus site.]

I've been reading up on and having to cope with cancer-related meds, therapies, side-effects and other conditions for some time now. Let me know if you need any other resources. Or, if you have a specific question.

Regards,
Jay

hulkster79 · 06-10-2002, 02:29 PM

wow, tons of info, thanks. as far as blood sugar problems, none ever that i can recall. the stroke was caused by a blood clot that had formed in my heart and eventually broke off and stuck in my brain somewhere. i generally dont really pay attention to all the terms when doctors tell me, i just do what they say (i figure they know what they are talking about and thats good enough for me!). one chamber of my heart doesnt function up to normal standards and the docs think that its a residual side effect that was previously unknown due to the relatively new and untried treatments i had. mostly chemo around 1986-7 or so. also i brought up the knees because i always had a hunch that i had weakened ligaments or something, as i also roll my ankles/jam fingers/sprain other joints twice as much as anyone i know, so i was wondering if i would have been more susceptible to that kind of injury. im going to read up more on this stuff, thanks again for the info.

-j

Jay Tor · 06-11-2002, 09:49 AM

Stroke due to blood clot - Apparently this is pretty common with blood/bone marrow related cancers. Our child suffered a serious pulmonary embolism, followed by a collapsed lung due to this. It's caused by messed up platelet aggregation [clumping]. Lots of extra meds and some treatment delays to prevent this embolism from making its way into the brain.

ACL, etc. - do you have a lot of 'popping' in your joints? According to our docs, this is due to bubbles [accumulated gas] forming in the sinovial fluid in the pockets between joints. Suggest you look this up because sometimes this means that you're more susceptible to 'ganglions' which occur when the sinovial fluid accumulates with resulting 'bump' interfering with movement of that joint. Depending on location, this can also be painful.

BTW, when looking this up - 'ganglion' has two separate and unrelated meanings. One meaning is this sinovial fluid bump, the other [more common] meaning relates to nerve bundles along the spinal cord.

Heart - this is another long-term side-effect of the underlying disease, some of the 'cardiotoxic' chemo drugs as well as complications due to infections while neutropenic, esp. if you had any very high fevers. We were advised to have regular echocardiograms to monitor this. If you can, consult a physiotherapist that specializes in post-cancer recovery - this may help you better plan your exercise/training. You can access the physiotherapy association on the Web; most physiotherapists us. include their specialties, if any.

Good luck,
Jay