Lymphoma Support Group

I was diagnosed with Peripheral T-cell Lymphoma in March of this year, in remission now but am told there is a good chance it will come back. I had none of the classic symptoms before my disease was diagnosed (nightsweats, fever, etc)so am at a loss to know what to look for if it should come back. Anyone out there have any similar experiences? Thanks!

Hi Debb....surprised no one has gotten back to you but hope someone 'steps up' soon and has something helpful to share.

Have a nice weekend post Turkey Day, hee. :}

Hi Debb! Welcome to the Lymphoma support group!! Sorry i have not been in here earlier------we are in the middle of moving.

I am not really sure what your lymphoma is exactly--------where is it located?

What i have is malt lymphoma----maybe it is the same thing------dont know. Mine is in the lining of my stomach... One treatment for lymphoma is actually called--------watch and wait--------which i have been on for 4 years-------now my biopsy results(via endoscopy) have changed---------so, they suggest radiation.Since all this appeared--------i have not had any

symptoms---4 years ago--and still dont know.......weird condition, i think.

How did they diagnose your lymphoma??? I would see that doc. regularly--did they suggest to be watched??

Take care. Keep us posted......hope i was of some help to you. Hugs, Sunflowers

Thanks for getting back with me. I don't envy you moving, not one of my favorite activities. My Lymphoma started as a small lump on my right abdomen, was treated for infection at first, then to a dermatologist who shot it with cortisone (didn't work). Had the tumor excised and the Biopsy came back as psoriasis. The area was 5 X 8cm by now with an open area 1 X 3cm, so they sent the tumor to National Institute of Health, where it was finally diagnosed with Peripheral T-cell Lymphoma.(very rare form, very agressive)Since I had no symptoms except the tumor, I am concerned that the disease could sneak up on me while I "watch and wait". What have they told you about what to expect? Anything? I hate living every day like I'm anticipating "something" but don't know what! Thanks again for writing!

Debb

Hi! I just got back from my radiation therapy tx, where the doctor decided to extend the therapy until the end of next week. Yesterday I went to "Prompt Care Clinic" regarding a blister I found on my leg the other day and THAT doctor said he thought I have Lymphedema in my legs, since the lymph system is obviously compromised, between the disease itself and the treatments for it. I think this dx may have been the determining factor for the extension of radiotherapy. Life is nothing if it isn't interesting, eh?

Hi Debb! I sure know what you mean about the watch and wait------------it is like-------well, what am i waiting for??? I have been having endoscopies done regularly for almost 4 years------then there were changes on the last one---bringing me to the lymphoma doc. I will start radiation in January........Hmm, now how long did you go for radiation--and now, how much longer do you need to go?? Did they make some kind of mold of your body--that you lie in for the treatment??? They said they would put perm. markers on my abdomen----------so they know exactly where the radiation is going--and hopefully not hinder any other organs....the whole thing really kinda scares me-------i still feel fine--------but, not complaining....

Tomorrow we start to move------------will be happy when it is all done-----so, it kinda has kept my mind off of Jan.---------so, guess that is a good thing.

Please keep in touch-------i will try to check my emails everyday....take care. Hope your treatments go well this week.

I like your quote-----true all this stuff-is keeeping life quite interesting, for sure! Hugs, Sunflowers

Hi Sunflower! I'm not sure how your radiotherapy will be done, but I can tell you about mine. My spots are on the surface so they aren't treating very deeply. They did mark on my skin the area they want to confine the therapy to with a permanent marker, which they have to re-do occasionally as it wears off. The radiologist prepared a plate (lead?) which fits into the Xray machine. The plate has a hole cutout just the shape of the treatment area. They shine a light from the machine through the hole onto my skin and line the light up with the marked area on my skin. Because they are not irradiating very deeply, they place a gel pad on my skin to keep the radiation close to the surface. The treatment itself takes very little time--10 to 11 breaths, I've counted as I'm lying there. I am starting my 6th week on Monday and I'm just now starting to get uncomfortable radiation burns on my skin. It's similar to what you'd get if you fell asleep at the beach on a really hot day with no sun screen. I don't have any blisters but I expect it's possible. The radiologist told me the effects are cummulative, so I expect the longer one gets treatments the worse the burns might be. Aloe vera will be your friend. You might even consider aloe vera liquid to drink if your digestive tract becomes effected. I used to work on an oncology floor in a local hospital, so I know I'm getting off easy--I could have it so much worse! I'll be praying you have it easy too, and a 100% cure! Oh yeah! You might want to ask your Dr. for nausea medications just in case (Compazine or Zofran). I had some slight nausea and minor fatigue early on--not so much now. Happy moving! Debb

Post edited by: DebbLW, at: 12/05/2011 12:20 AM

Hi Debb!!! I am so sorry it has taken me so long to get back to you!

Yes, we did move-----and it was a rough time--but, it is done and know pretty much where everything is! I really appreciate our explanation------it all sounds familiar---except they told me they would make a mold of my abdominal area----so the radiation will only hit that area-----so, sounds like when u get the light onto your stomach....hmm, now has your treatment ended??? How are the burns on your stomach?? Do they continue to feel like you were burnt?? I am sorry--i am just full of questions----and next monday i will start-----they said a cat scan--then the mold---then come back a week later--and maybe then, they will start the radiation. Mine is in the lining of my stomach----just so weird---uggg. I sure am going to ask for nausea meds-----i hate that feeling...

You sure are right----we are lucky----radiation is nothing compared to chemo.----that is super bad to tolerate. I do wish you the very best for 2012--a happy and healthy one to you and your family.....hugs, Sunflowers

Good Morning! I just read your message, my grandson has had control of the computer lately so I couldn't check my messages, Yes I'm all done with my treatments (hooray!) I didn't have too tough a time with the burns at first, but after the last 3 treatments things began to cook! Consider pain meds in your requests. I had a total of 33 treatments and about 3weeks of serious pain. They gave me Aquaphor ointment which was like putting Vaseline on the burn (NO help, except to moisturize) and some creme specifically for radiation burns, also not very effective. I did the Aloe, Bagbalm and Neosporin Plus with pain reliever. I think the Neosporin helped most because of the topical pain reliever. I could have gotten oral pain meds but never asked. I did use Ibuprophen, with moderate results, sometimes up to 1000mg. I'm pretty much healed up now, just a few spots where it opened up to bleed even, taking longer to heal I think because I'm also diabetic. I hope your treatments are going well, and you have very limited complications. And congrats on getting moved! We are pushing to get our daughter and her son moved OUT of our house into their own (Whoo-hoo!). It's been nice having them but I think everyone will be happy to have their own spaces back! Happy Neew Year to you, as well as health and happiness! Debb

Hi Debb!! I am so happy for you all your treatments are done and over with----what kind of follow-up do they do to see it is gone?? How did they find it--endoscopy??

I did go yesterday for the prep-----had bloodwork, they made a mold of my upper body, cat scan and did my tatoo's-----i was hoping for some roses or something pretty--not just a spot! They told me of all the possible side effects now and in the future----that part was so grim-----eneded up crying and making a fool of myself---it just became overwhelming---- so, i am better today...just want to get it over with. I am scheduled for 15 treatments---starting on the 16th.....so here's hopin' it is not too bad. I do have the 3 lotions/creams you mentioned----so, i guess i am prepared!!!

I am hoping for your sake--your daughter and g-son do move out----you deserve some relaxing time and they need their space too. At xmas i did get some good news--surprise actually----my son and d-i-l are having their first child----in July----they have been married for 5 years-----so, was wondering if it would ever happen! So, i am hoping all goes well for them-----and then, hope to go and visit them----they live out of state. So, no babysitting going to happen here! LOL

Take care Debb....i really appreciate your time and explaining your situation with me.....dont know anyone who has had this or can relate to it. Thanks so much.. take care. Hugs, Sunflowers