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Prednisone
Over the past several months, I have had numerous flare ups of a seeming allergy--to something. It would manifest as big red lips and chubby cheeks. And I mean BIG red lips. The movie stars and their silicone lips don't hold a candle to mine. I was finally referred to an allergist/immunologist. Yesterday because of my…
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Had 6 cycles of ABVD
i don't mean to be a Debbie Downer and I am greatful to be in remission but I thought I was going to feel better than this. My last infusion was 21 March and I am feeling pretty down since I am not bouncing back like I thought. I know I need to be patient. can anyone shed light on how long it took after treatment before…
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Great News!
. . .for those who remember Michelle and Kyle. . . I just got a message from Michelle, who asked me to share with everyone that they are doing beyond wonderful. Kyle is now 1 year post allo stem cell transplant. They are living in Denver but getting ready to move to Texas. Michelle is working as a travel nurse and Kyle is…
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4 months checkup and my dream
Today, I had a visit with my Hematologist/Oncologist for the first time in four months. Of course I had been fretting about it for several days. But everything was fine (yay!). My blood counts were good and his very thorough physical examination was good. He asked a million questions and in the end was satisfied that all…
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Finally decided to share my story
hey all, finally decided it it was time to share a post. I was 48 years old when I was diagnosed with NHPHL. diagnosis did not come easily as I didn't have your typical symptoms. It was mid-July 2015 and I was experiencing a nagging unproductive cough for weeks. I went to my GP on two different occasions. The first time I…
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Treatment Finished
Well...the treatments are officially over for me now...Actually felt myself laugh and smile earnestly this weekend.This stuff sure changed my outlook on a lot of things, I am sure for the better...I was the last hold out as a smoker , now I have not smoked in 29 days. Lost the attitude in life that it won't happen to me...…
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Onc appt
Tomorrow i see the Onc to get labs done and will find out if my white cell count is getting better, if not then she will want bone biopsy, i am thinking positive, she will order the PET scan i have been wanting that will show if anything is active,no matter the out come, i am not letting it slow me down, got too much to do…
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Tampa, Florida T-Cell patient education seminar April 23rd, 2016
This free seminar is a great opportunity to connect with the best and brightest in the fight against T-Cell Lymphomas, to learn and to build hope. Featured are University of Washington Associate Professor and research hematologist Dr. Anderi Shustov, and guest speaker Dr. Lubomir Sokol PhD, from the Moffit Cancer Center in…
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Very High Liver enzymes after 2 rounds or Rituxin abd Betamustine? Now What?
Hi All, I am writing as a very worried wife. My husband was was diagnosed last year at thistime with Follicular NHL and aftera "wait and see" his catscan in 12/15 showed the changes that now require Chemo. His suggested treament plan is 6 rounds of Betamustine and Rituxan. After the first round he ended up in the hospital…
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Not diagnosed just a question.
My groin lymph node became swollen (Oct 2015)after an adnexal mass ruptured (July 28,2015). I figured it was just a response to the mass rupturing and bleeding into my abdomen. Unfortunately the lymph node is still swollen and actually getting bigger. I've been having issues with edema, and I've noticed my neck is minorly…
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Totally Bummed Out
So, went through the RCHOP two weeks off started feeling great now radiation..feeling exhausted ..Just get bummed out looking at me old bald self driving an hour each way to radiation..went back to work and it just seems there is no FUN...work, tired Drs and treatment....waa waa waa...Did you spend a lot of time…
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Cumulative side effects or in my head?
Howdy all. First-time poster looking for insight. Fighting Hodgkins. Heading into ABVD infusion number 6 of 8 next week. So far I've tolerated it relatively well except for neutropenia which it seems Neupogen is taking care of. However, this go round it doesn't seem like i'm having my typical "pop" and I've been more run…
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Husband diagnosed with Follicular Lymphoma stage IV-finished treatment but...
My husband who is 69 yrs. and in excellent health prior to this shocking diagnosis (when is it not?), just completed 6 months (2 days each) of Bend/Rituxan 3-1/2 weeks ago. He did pretty well with each, aside from the apparently typical side effects, which were not fun; but he bounced back after about 7 days following each…
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One constipation idea...
This info is just in case somebody else out there is having a similar problem. I realize I may be only a tiny percentage of patients, but this discovery changed my chemo life completely. Like everyone I approached chemo determined to do exactly as I was told. I love my Oncologist and totally trust his care. Like most,…
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Zevalin
I have not posted in a while. I am in remission since 09 , Have a scan coming up in June. I have so many other problems, I have sever gerd and ended up in the er last night with terrible pain. I was diagnosed with follicular NHL in 04 had surgery on my neck to take the salivary gland out. Then did 22 radiation treatments.…
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Still have stomach issues after autogolous transplant-anyone else?
Hi all- my mom is day +75 post autogolous stem cell transplant for transformed dlbcl. She still can only eat very small amounts at a time.. If she eats more than that she becomes nauseous and feels full- occasionally vomits. We saw the doctor today who seemed to think this was not normal this far out from transplant. Has…
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NED
As I sit here with happy tears saying NED over and over I am beyond happy! I know that I'm high risk and that remission could be short or long, I'm happy to say that for now I'm NED! No evidence of disease! Happy day today! Sharon
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Anyone heard from Po18Guy
Hello everyone, Just wondering if anyone has heard from Po18Guy (Jim)? Last time I saw a post from him, he mentioned that he had relapsed. Take care everyone (((Hugs))) Sincerely, Liz
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Short note
Been awhile since i posted,had chemo again for the 3rd time since first dx 2008. had Treanda and Rituxan, one time a month 2 day session for 6 months, and it really kicked my butt. I didnt do the stem cell, told my Doc i wasnt ready for that, had labs done and it is showing my white cells are dropping little by little,…
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After Stem Cell Transplant
I just had my meeting with the Dr who will oversee the Stem Cell Transplant process. They gave me a binder with all sort of documents and information. There is a section with the Outpatient Guidlines. A lot of the pages come from the Bone Marrow Donor program. (They ae using my own t-cells so no donor.) It really goes into…
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4 Years In Remission from Stage IV Non-Hodgkins DLBCL and Scared for the First Time.
In September of 2011, I wrote the following: “…hearing that my “backache” was an aggressive and very advanced cancer has thrown me for an utter and completely surreal loop but I feel (down deep / in my soul / existentially) that this isn’t gonna’ get me. Advanced/aggressive DLBCL can be treatable - possibly, curable.…
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Bottled water and floride
Dear Jim and all, Jim, I was lucky to find this information right away. I am pasting 2 paragraphs I found online. It seems Poland Spring has the smallest amount of floride, and yes i was correct. If the bottle is labeled "reverse osmosis filtered" or "steam distilled" that very little if any of the original source water's…
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Swollen Lymph Node in Groin and other pains
I do apologize for posting here. I read your stories and am amazed by the courage and bravery here. I apologize because i have not been dianosed with HL or NHL, but have issues and concerns and a doctor who is very dismissive. Here is my story. June 2013 I get terrible pain in behind right testicle. Diagnosed with…
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LRF (Leukemia Research Foundation) for All Blood Cancers
Today I was at a Town Hall meeting held locally by the LRF. They had 5 doctors from major hospitals in the Chgo area, who specialize in the blood cancers. (One of them is the Dr I am seeing at Rush.) The Town Hall was people asking questions and the doctors answering them. There were some vendors there to povide…
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lizz888--Stem Cell Transplant Update
Hi, All! This post is just to add to the posts here from those anticipating stem cell transplants or who already received their transplants. After 6 rounds of RCHOP failed to put my dad's lymphoma into remission (although it certainly looked like it was going to) he went right on to RICE and prep for a stem cell…
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Regaining Energy and Strength after Bendamustine and Rituxan
My friend has completed Benamustine and Rituxan treatments. He wondered how long it would take for him to regain his previous energy level and strength Thanks!
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Bone Marrow Transplant
In November last year I had my bone marrow transplant. I was my own donor. It's been 5 months since my last treatment and I'm doing great. I'm glad it's all over and I'll never do that again.
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Can results vary with different scan methods?
Hi! It has been 1 year since I received the news that my Follicular Lymphoma was in complete resolution. I had received 2 PET Scans- one with the iinitial diagnosis and one after 4 treatments with Bendamustine and Ritauximab. One year later, my doctor did a CAT scan (my first). In the findings they said that one of the…
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Stem Cell
Well it looks like stem cell will be in my near future, not going to lie, i am very nervous about it all, Oncologist said this is my only option at this time, i have heard good results and a few bad, i hope this will be it for me as far as treatment goes for a very long time, will post more as i learn more, please pray i…
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Windows Study for Mantle Cell
Hey folks. Just a note to let you all know I'm still here and doing well. I've been in the Windows Study at MD Anderson for the past 4 months. I just finished a trip to Houston and had a PET scan and BMB done. They were NED. Praise God!!! I still have to have a colonoscopy done and if that is clear then on to a heavy dose…