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About MyLymphomaTeam
Real members of MyLymphomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

The Beginning

The Beginning

Two plus years of difficulty breathing and multiple Urgent Care/ER Md’s telling me all labs and heart look great! “Btw heres some muscle relaxers.” Monday this past week I hyperventilated in my MDs office. She sent for a stat CT of chest and there are multiple lymph nodes that are “very large”. On tues they did an abdominal CT they had to get special approval because of too much contrast under 24 hours. It came back clear and more labs/ekg, also clear. Worked me into a Pulmonologist Weds and he… read more

edited, originally posted over 2 years ago
A MyLymphomaTeam Member said:

Five years ago I had some stomach pain and bloating and remember vividly being startled awake in the middle of the night, my hands over my liver area, and a voice in my head that very clearly said "you're dying!" The next day I scheduled a long overdue colonoscopy. A few weeks later after my colonoscopy I was diagnosed with Stage 4 colon cancer which had metastasized to my liver. Statistically only 8 - 14% of people survive to 5 yrs. with this type of cancer and here I am. Last May on an annual oncological check up we had basically finished up my oncology appt and the Dr asked me if I had any questions and I just said well my lymph nodes feel like they did when I had cancer before. Can you check them? After running more tests and biopsies it was discovered I have Stage 4 Non Hodgkins Splenic Marginal Zone Lymphoma, which is an indolent, yet chronic type of cancer. In reality compared to what I had before this one isn't so bad! Don't get so caught up in the staging as much as whether it's indolent/low grade, or high grade/aggressive. Also, pay attention and listen to your body!
Lymphomas can have high remissions and/or cure rates.

posted over 2 years ago
A MyLymphomaTeam Member said:

Easier said than done, but don't let your mind wander into the worst case scenario. It seems like light years away before you hear the results on Valentine's Day, but try and remain hopeful and positive for a brighter outcome than your probably thinking right now. I have been diagnosed with Non-Hodgkin Follicular Lymphoma in early Sept. 2019. I did the chemo therapy, called R-CHOP and finished Dec. 24, 2019. Mine was found in my small intestine and will know if I am in remission when I have a colonoscopy in April. I try and remain positive each and every day and thank God for each day he is giving me. I pray that all will go well for you so try and remain positive through this difficult time. All the best and let us know what your doctor says.

posted over 2 years ago
A MyLymphomaTeam Member said:

Jeez what fabulous news!
This message is for Turid, John T, Countess 45, KellyKessler,
After my bone marrow biopsy, I was told there was nothing of any significance in my bone marrow..... The doctor told me I did not have Lymphoma but I do have ITP (Immune Thrombocytopenia Purpura) caused as a result from my long standing blood clotting disorder (Antiphospholipid Syndrome/Lupus Anticoagulant). This combination is very rare and mimicks Lymphoma. My platelets are still low and I still have an enlarged spleen. When the symptoms get more troublesome, she will start me on Rituxan to try and shrink the spleen and elevate the platelets. A watch and wait situation.

posted over 2 years ago
A MyLymphomaTeam Member said:

I started with what I thought were panic attacks, ulcers and diverticulitis. There was a mass discovered in my groin area when I went to the emergency because I was passing blood in my urine. This diagnosis seems to come out of nowhere. I was diagnosed with diffused large B cell lymphoma stage three. Went through 6 infusions of R-CHOP chemo over 18 weeks and 20 radiation treatments and am now in remission. It is good advice to right down questions and answers and helps to have that second person there if you can. The people on this site can share because there are many different types of lymphoma that I never would have known about.
Let us know how things are going as you go along and we’re here to help.

posted over 2 years ago
A MyLymphomaTeam Member said:

Just left my oncologist appt and expecting to talk about either a splenectomy or Rituxin treatment as I was diagnosed with Splenic Marginal Zone Lymphoma Stage 4 since there was bone marrow involvement last May. Then in November I did a PET scan and had splenomegaly and my doctor said he'd like to do a splenectomy. Today my blood count was normal, and my spleen had shrunk and no B symptoms and had he not already confirmed SMZL he would have a hard time believing I had it. He told me to continue whatever it was I was doing and come back in 4 months! Watch and wait! I'm good with that!!

posted over 2 years ago
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