Non-hodgkin's Lymphoma Support Group
Non-Hodgkin lymphoma is a type of cancer arising from lymphocytes, a type of white blood cells. It is so called because of its distinction from Hodgkin's disease, a particular subtype of lymphoma. It is in fact an overarching term of many different forms of lymphoma, each with individual characteristics. Most cases start with infiltration of lymph nodes, but specific...
Ive been watching the comments on here for several months and can identify with many of you. Heres my story as it stands today. If I can help anybody else/answer questions for anybody, please let me know.
A toothache in Feb. 2012 led me to my regular dentist. I thought I had a cavity. I had been getting shooting pains in one tooth. The dentist sent me to the Endodontist. Several weeks later, the sharp pains were along my entire chin/jaw/gum region. The Endodontist sent me to the Periodonist. The Periodontist sent me to the Oral Surgeon. Shooting pains were extreme and lasted several hours at a time.
Oral Surgeon sent me for a MRI and to the ENT and to the Neurologist. MRI showed significant activity in my mandible but cant determine cause but suggests it is most likely an infection. Neurologist and ENT have no clue and send me back to the Oral Surgeon.
Oral Surgeon does a bone biopsy and a week later Im told I have Diffuse Large B Cell Lymphoma. Were into July now and the trigemenal nerve from the cancer on the left side of my face is so damaged my mandible is the size of a golf ball and, the gum and lip are severely swollen and everything is completely numb.
The Oral Surgeon sets me up with an Oncologist for the next day. Oncologist sends me straight to a PET Scan. PET Scan reveals Stage 4 lymphoma with multiple spots in 4 different locations. Lumbar puncture and bone marrow biopsy were clean.
This is early Aug. 2012. I went for R-CHOP every 3 weeks for 6 cycles, so 18 weeks total. Side effects were minimal for me. The golf-ball-sized lump disappeared after the first R-CHOP treatment. I was certainly fatigued, had insomnia and lost all my hair. The Zofran and Ativan controlled the nausea. Some taste loss and mouth and stomach issues. I still have neuropathy in my fingers and feet.
My 2nd PET Scan after first two treatments showed significant improvement, so no additional PET Scan scheduled until after final R-CHOP in Dec. That PET Scan showed questionable activity still in my left mandible, which could be positive bone marrow activation or could be Lymphoma, so radiation scheduled.
Just finished radiation yesterday (Jan. 2013). I went through 18 treatments. Side effects from the radiation have been pretty bad since basically my mouth was getting zapped. I currently have ZERO taste buds, which is driving me crazy and Im starving. I am still completely numb on the left side of my face/chin/lip/gum/teeth. I think the nerve was just too damaged before I got diagnosed.
I still dont have an all clear. My next PET Scan will not be for several months once the radiation treatment has worn off.
All that being said, I have been watching many of the stories on this website and if I can offer any one advice, please let me know.
All the best to you all.
A toothache in Feb. 2012 led me to my regular dentist. I thought I had a cavity. I had been getting shooting pains in one tooth. The dentist sent me to the Endodontist. Several weeks later, the sharp pains were along my entire chin/jaw/gum region. The Endodontist sent me to the Periodonist. The Periodontist sent me to the Oral Surgeon. Shooting pains were extreme and lasted several hours at a time.
Oral Surgeon sent me for a MRI and to the ENT and to the Neurologist. MRI showed significant activity in my mandible but cant determine cause but suggests it is most likely an infection. Neurologist and ENT have no clue and send me back to the Oral Surgeon.
Oral Surgeon does a bone biopsy and a week later Im told I have Diffuse Large B Cell Lymphoma. Were into July now and the trigemenal nerve from the cancer on the left side of my face is so damaged my mandible is the size of a golf ball and, the gum and lip are severely swollen and everything is completely numb.
The Oral Surgeon sets me up with an Oncologist for the next day. Oncologist sends me straight to a PET Scan. PET Scan reveals Stage 4 lymphoma with multiple spots in 4 different locations. Lumbar puncture and bone marrow biopsy were clean.
This is early Aug. 2012. I went for R-CHOP every 3 weeks for 6 cycles, so 18 weeks total. Side effects were minimal for me. The golf-ball-sized lump disappeared after the first R-CHOP treatment. I was certainly fatigued, had insomnia and lost all my hair. The Zofran and Ativan controlled the nausea. Some taste loss and mouth and stomach issues. I still have neuropathy in my fingers and feet.
My 2nd PET Scan after first two treatments showed significant improvement, so no additional PET Scan scheduled until after final R-CHOP in Dec. That PET Scan showed questionable activity still in my left mandible, which could be positive bone marrow activation or could be Lymphoma, so radiation scheduled.
Just finished radiation yesterday (Jan. 2013). I went through 18 treatments. Side effects from the radiation have been pretty bad since basically my mouth was getting zapped. I currently have ZERO taste buds, which is driving me crazy and Im starving. I am still completely numb on the left side of my face/chin/lip/gum/teeth. I think the nerve was just too damaged before I got diagnosed.
I still dont have an all clear. My next PET Scan will not be for several months once the radiation treatment has worn off.
All that being said, I have been watching many of the stories on this website and if I can offer any one advice, please let me know.
All the best to you all.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Then I started chemo, first round was CHOP (due to some pleural and pericardial effusion which were caused by the surgery, they had to leave out Rituximab) But after they've drained the fluid, Rituximab was added to the remaining cycles of chemo. Post-chemo PET scans showed most of the cancer has gone but there's still some around my heart which can be treated with radiation but he suggested a stem cell harvesting in case of any relapse in the future. But the stem cell harvesting wasn't successful. They only managed to collect 1/4 of the needed amount. So I just went on with radiation (tomotherapy) to the chest area.
Did chemo helped? Yes indeed. Just after the first cycle of chemo, the cough has gone completely. I was feeling very weak after the surgery, no appetite whatsoever, couldn't even walk without feeling tired after. But after chemo, everything feels good, (maybe it's a side effect of the prednisolone but not really sure) I went shopping, hung out with friends, wrestled with my brothers like we always do and a lot more. I just feel like myself again.
So yeah, that's my story, hope it helps. Sorry it's so long though.
All the best to you :)
FiraR, what came of your Pet Scan?