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About a year before all of my pouch revison surgeries (1998-99) I started getting infected inguinal cysts, it cost me a couple of surgeries to have them excised...then all of the major surgeries started and we sort of left the rest by the wayside...in 2006-2008 they kept coming back and I had a couple more surgeries to remove them...the surgeon finally took out both 'chains' of lymph nodes, right and left, front and back in the inguinal zone...we never thought much about it but then the pathology report came back with 'non hodgekins lymphoma'...it shook me up a bit at the time (I may have posted something back then) but then my pouch fell apart again and I had to have another 6 pouch surgeries...they pretty much took over all of my brain-space and didn't leave me room for any other medical issues.
My GP retired 2yrs ago and never bothered to leave the files for the new guy so I am slowly rebuilding my medical history with him. I came across the pathology report for the lymphoma and told him last week and suddenly all of the bells and whistles started up in his mind.
Since I have been complaining a lot lately of exhaustion, sluggishness, really bad immune systems and healing (fine, I also have D'Heler's-Danlos syndrom) and a general lousy energy level he is starting to worry...could this all be related to the lymphoma? I thought that once they had removed the lymph nodes that it was a done deal...is this something else that I have to worry about?
Sharon
ps..my health insurance cut me off yesterday! Am working on getting it reinstated.
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Could it all be related? Certainly! Worry? Maybe,but if this was an aggressive form, you'd probably be dead right now without treatment. Little consolation, I'm sure, but hopefully it helps to know this must be the more slow growing type. If you can remember the lab that did the pathology, they may still have the results. The hospital where the surgery to remove the lymph nodes was done probably has records too. Here's a link for you:

http://cancer.gov/cancertopics...non-hodgkin-lymphoma

Jan Smiler
Thanks Jan,
I called the surgeon's office and the secretary is looking up the surgical date and the path report...we know the name of the clinic that the surgery was done in...at the time we were tired of removing lymph nodes every other month so he took them all out of the groin (they had already removed 1 in my calve behind my knee ?? and armpits plus a few others)...he was a plastics man and so did not follow up on it...but I never had another problem with them after that...is it possible that the abalation of the whold chain removed the problem? Granted that I am tired/dizzy/exhausted a lot but I am certainly not loosing any weight... Frowner...it certainly must be the slow type...I need to get the health insurance problem straitened out before I can go for any bloodwork or see a specialist...the timing sucks.
Will wait and see I guess, any suggestions on how to get my energy up and get rid of this ongoing cold/flu?
Sharon
I have no clue. I am sure you already doing the proper sleep, varied diet, happy life bit, as best you can. I am not a big believer in supplements being any sort of panacea, particularly when you have a real medical issue to be addressed (sort of the "spitting in the ocean" type thing in regard to effectiveness).

First thing is to find out what the diagnosis is, and that would be in the path report.

Jan Smiler
Hi Sharon

I hope you do not have this terrible disease, my father has an aggressive form of Non hodgkins lymphoma, they tried chemo tablets when was first diagnosed just over two years ago, but they said to give him the dose they would need too could kill him, so they have been controlling some of his symptoms with blood transfusions, although last week at his appointment his blood was quite good for him and the tests and his new symptoms where the lymphoma getting more aggressive. He was breathless, last week and previously when he has been breathless it has been anaemia that has caused it, but this time it wasn't the anaemia. He has red patches and what look like lesions under and on his skin which have become worse over the last few months again we were told that is the lymphoma. We thought we would loose him before the end of last year and my brothers decided to get him on lots of vitamins and protein shakes , whether its mind over matter were not sure but we did see him improve and he continues to take the vitamins and protein shakes religously. We know that he will only get worse,as they have said other then the blood there is nothing they can do for him, he is 78 also and I'm sure that plays a part in his prognosis, he is back at the clinic tomorrow so we will see what happens. Where not sure how much longer he has, he has lost lots of weight even since May of last year. Have you had regular blood work done as it was my fathers elevated white cell count that led them to his diagnosis after other testing. But initially once the blood results where through he was seen within a week. I will hope and pray that you do not have this lymphoma. Let me know how you get on.
Take care
Shelly xx
I am so sorry about your dad Shelly,
I lost my mom last summer to a 'none-specific blood disease' (I never got the report from the autopsy)...it took 3 months...she started feeling really, really tired in May and her white count was low but so was her red count (under 8)...they checked for lukemia and a dozen other things and started transfusing her daily/weekly...3 months later she was gone. She swore to me that it wasn't lukemia or lymphoma but I was over 5000miles away and only spoke to her over the phone...her death came as a total shock to me...very unexpected...she had been talking about bone marrow transplants, stem cell treatments etc and apparently they are both viable options...She just never got the chance to try them...Like Jan said, it cannot be an aggressive type for obvious reasons and honestly other than the extreme exhaustion (I feel like a baloon that just deflated) and occasional shortness of breath I am fine...but it is the exhaustion that kills me...for now, I am waiting for my health insurance to kick in again to move forward with the tests...
Sharon
Oh Sharon - I will say it that suxxx! I thought life would be a little easier for all of us in 2013! The kicker too is that you have to fight for your insurance! Another stress that you don't need at this time! Are you anemic as well? SOB and fatigue is a symptom as well. I hope your insurance kicks in so that you can proceed!
I had a lesion removed on chest and it came back as squamous cell carcinoma hoping that it has not reached the lymph nodes! I love your saying "It could be worse....oh wait....it already has been!" May it get better of all of us!

Roberta
Thanks Roberta, you're sweet...for now I have done my due deligence and sent out all of the paperwork, scans, faxes and photocopies etc and hoping that they untagle the spagetti that they call personal files...funny thing is that they confirmed that I am paid up til the end of 2013!!! Didn't stop me from getting booted! Darn. They just cut off my credit card too (someone is playing with me, I am sure! and I got a registered letter from income tax!!...who is playing with my Karma????) I should know by the end of next week if I have been reinstated...or when...until then still search out pathology reports...
Was less tired today for the first time in ages...hopefully will last. The doc will make arrangements for tests once the insurance is back...For now I am trying to eat right and sleep more...What are they doing for you for the cells? Are they doing any further tests? Do they do any needle biopsies? When will they test your lymph nodes?
Sharon
Sharon,
I have follicular lymphoma, the slow growing, non curable non hodgkins lymphoma and was told I was at a much higher risk for it since I had UC-crohns. My lymph nodes were so large they were blocking the pouch and had blockages every day until diagnosed then had to be feed thru my heart for a month. I had chemo, rituxan, wasn't that bad and it shrunk the nodes to a much smaller size, although they usually come back in time. Am doing fine now, playing tennis every day but am now in the bathroom 30X a day due to 2 strictures, pouchitis and vaginal fistula. Incidently, I lived in Brussels for 4 years so understand it can be more of a challenge medically although I found all the other wonderful aspects more than make up for it.
I didn't know removing the lymph nodes surgically was even an option for non hodgkins.
Am thinking of you and wishing you the best. PM me if I can help in any way.
Christine
Thanks Christine,
First off, so sorry that you are living in the bathroom...just not fair...what can they do to help you?
Next...They did not remove the lymph to get rid of the lymphoma but the opposite...I was having 'over infected lymph' as the called it on a regular basis...meaning I would get a swollen lyph node with a red spot over it, the next day it would be the size of a grapefruit and I would be running 41° fever...I went to see my surgeon (a really nice guy) and he took it out the same day in ER...it happened about 6xs in 6months...just kept coming back...different node each time...they would open them up, drain them and I would be left with a hole in my groin or behind my knee for 2 months...I was staph doré, gram positive...each time and antibiotics weren't helping at all (lived off of cipro for 10+months)...they started coming in bunches like grapes after a while...finally one surgeon decided to pull out all of the lymp on both sides of the groin...And that is when I got the pathology report...Exactly the same as yours...folicular lymphoma, non-Hodgkins...but I was in such a mess with my pouch and abdomen with over a dzn surgeries that I just left it figuring that pouch/valve failure trumped lymphoma...now that things are a bit calmed down with the pouch I am conscious that I may need to deal with this lymphoma business...ignoring it does not make it go away and I am afraid that I need to address the subject soon...
For now, I just got my insurance back, am working a bit and need to get my head on strait...
Sharon
Sharon,
I have spent over 150 hours on research on follicular lymphoma and am part of a worldwide site that specializes in it. I have seen some of the top follicular MD's in the country so please let me know if I can help at all.
The web site which I spent time on is similar to this one and is www.lyphomasurvival.com and membership is $35, best deal in town, I have followed almost all the primary persons recommendations and diet espectially which is crucial. It is the primary worldwide site for follicullar lymphoma.

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