Non Hodgkin's lymphoma

Posted by maisyann @maisyann, Mar 22, 2016

Non Hodgkin’s lymphoma

Would like to find a support group in regards to non hodgkins lymphatic B cell.

@jaler

I also have non-Hodgkins lymphoma B cell and would like to join your support group. I am presently housebound because of a low white blood cell count and have been confined to my home. I'm at Mayo in Phoenix and receiving chemo treatment there. I have had four RCHOP treatments and am scheduled for two more.

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Just checking in. Since being on Neurontin/Gabapentin the neuropathy is better, which I enjoy because I can walk more. I am still nauseated unless I take Phenergan and Zofran, but at least I am able to enjoy lots of veggies and some fruit, since the obstructions are gone. My head hair is slowly growing back, and maybe I will stop wearing beanies by this summer.
What does anybody have to say about my team not wanting to do a 6 month PET scan if I am not symptomatic? My only symptom was nausea over 4 years, and I still have it even though the tumor was resected and I completed R CHOP and they say I am cured. They say that because I had so much xray and nuclear medicine during those 4 years while they searched for a cause for the nausea, and that the PET is so heavy xray/nuclear medicine-wise, that it's not a good idea. I was hoping to be able to get that benign PET done every 6 mo…
Thanks for your comments….

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@vonbaron36

I was diagnosed in 2014 with follicular lymphoma. I had radiation for a tumor on my neck. My last pet scan in 2017 showed no cancer since.

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Yes I worry about a recurrance. When its time for my next check up which has been a year now, I worry the most when its close to my next PET scan or CT scan. I had my yearly check up March 30th and it was clean. No detectable cancer. What a relief. Told to come back in a year. So I won't worry too much until it's time for my next scan. Then the same routine.

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@carolelaine

Hi I have the same non hodkins lymphoma B cell…had my first of 6 treatments..20 days ago…next treatment is 3 /27. 3/28….I'm in Huntsville Alabama…had a in explainable reaction..last week…103 temp..all bones hurt..hospital for 4 days…but..just had a stomach biopsy and came back neg. So something is working…cancer doc and I decided next treatment will be 4 hour instead of 6 with the Rob. Targeted chemo…scared but willing…no doubts the cancer is leaving…just getting through the chemo. My heart is with you..in Bama ❤

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carolelaine, how are you feeling since your last chemo? I hope the shorter exposure has decreased the side effects. My thoughts are with you. gp

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@vonbaron36

I am going on four years with with folicular lymphoma.

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Hi @vonbaron36
I'd like to introduce you to @travelgirl who also has follicular lymphoma, a type of non-Hodgkin lymphoma.

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@vonbaron36

I am going on four years with with folicular lymphoma.

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@vonbaron36 I also have follicular lymphoma. I been on a watch and wait approach for 2 1/2 yrs..

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I was diagnosed with Central Nervous System Large B Cell Non-Hodgkin Lymphoma in February of 2016. After bouncing all around from dr to dr over a seven month period, Mayo in PHX diagnosed me in 48hours. I was down 30 lbs, lost cognitive abilities, balance and continually passed out. Mayo literally saved my life. I was in the Mayo hospital for over 3 weeks. My treatment was high dose Methraxate, rituxun, and Temadar. Mayo set my protocol and sent me back to my home state after finding a Hemo-Oncologist to treat me. My last treatment was December of 2016 after spending over 76 days in hospitals during 2016. The treatment was brutal, but today I am fully functional and well. I am so grateful for Mayo and the fabulous care I had there.

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@mepowers

I was diagnosed with Central Nervous System Large B Cell Non-Hodgkin Lymphoma in February of 2016. After bouncing all around from dr to dr over a seven month period, Mayo in PHX diagnosed me in 48hours. I was down 30 lbs, lost cognitive abilities, balance and continually passed out. Mayo literally saved my life. I was in the Mayo hospital for over 3 weeks. My treatment was high dose Methraxate, rituxun, and Temadar. Mayo set my protocol and sent me back to my home state after finding a Hemo-Oncologist to treat me. My last treatment was December of 2016 after spending over 76 days in hospitals during 2016. The treatment was brutal, but today I am fully functional and well. I am so grateful for Mayo and the fabulous care I had there.

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Hello @mepowers, thank you for sharing your experience with your treatment at Mayo Clinic. You mentioned that you are functional and well following a tough go with your treatment. If you don't mind sharing, how has your recovery been since spending 76 days in the hospital? That is a long stay, but it is great to hear you are progressing, is each day better than the last?

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@mepowers

I was diagnosed with Central Nervous System Large B Cell Non-Hodgkin Lymphoma in February of 2016. After bouncing all around from dr to dr over a seven month period, Mayo in PHX diagnosed me in 48hours. I was down 30 lbs, lost cognitive abilities, balance and continually passed out. Mayo literally saved my life. I was in the Mayo hospital for over 3 weeks. My treatment was high dose Methraxate, rituxun, and Temadar. Mayo set my protocol and sent me back to my home state after finding a Hemo-Oncologist to treat me. My last treatment was December of 2016 after spending over 76 days in hospitals during 2016. The treatment was brutal, but today I am fully functional and well. I am so grateful for Mayo and the fabulous care I had there.

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I actually didn’t spend 76 days in a row. Each time I went in for my high dose Methatrexate treatments, I had to stay for a minimum of four days. I went in every other week for the first half of the year and then monthly for the second half. I was able to do Rituxin as an out patient at the Cancer Center and Temadar at home. The first half of the year the treatments were busy killing the lesions. By about June, the Cancer was gone, but my protocol had me continuing the treatment. My cognitive abilities were severely impacted with the many lesions and certainly that improved. The first part of the year I survived Cancer, and during the second half I survived the treatment. Hospital stays were rough being connected to the IV 24×7 along with the ensuing side effects of the treatments exasperated by bad food and lack of sleep. By the end, I felt I knew more about my treatment than the revolving door of residents. This was at the hospital in NM, not Mayo. Mayo is a five star resort compared to the 50 year old hospital I was in. Care was fine,but the facility was awful with shared adjoining bathrooms and showers down the hall. The chemo kills everything, so my kidneys and GI tract were the primary targets. I still have some minor issues, but nothing that can’t be dealt with. Chemo brain followed me for a good 8-12 months post treatment. I could often see the words I wanted to say, but couldn’t find the words to say. I also had and still have issues with reading retention. I listen to lots of books these days. I was super active prior to being sick. I didn’t do much besides walk on a regular basis while I was undergoing treatment due to the fatigue factor. Once I was done getting treatment, I started working with a trainer that helps me reach my potential every week. At the nine month mark, I competed in a competition called the Sampson Challenge where there are 10 events. My goal was just to finish it. I ended up coming in second in the 50+ Female division. Every day I feel gratitude for my good fortune.

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@colleenyoung

Hi @maisyann, welcome to Connect.
I’m tagging @kjs1015 @aamarion @diana63 @djzlady96 to see if they will return to talk about their experiences with Non Hodgkin’s lymphoma.

Maisy Ann, when were you diagnosed? What treatment are you getting or have you had?

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My daughter has lymphoma cancer and finished 6 chemo teraphies

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@colleenyoung

Hi @maisyann, welcome to Connect.
I’m tagging @kjs1015 @aamarion @diana63 @djzlady96 to see if they will return to talk about their experiences with Non Hodgkin’s lymphoma.

Maisy Ann, when were you diagnosed? What treatment are you getting or have you had?

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praying for a positive outcome for her!

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@colleenyoung

Hi @maisyann, welcome to Connect.
I’m tagging @kjs1015 @aamarion @diana63 @djzlady96 to see if they will return to talk about their experiences with Non Hodgkin’s lymphoma.

Maisy Ann, when were you diagnosed? What treatment are you getting or have you had?

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Hello @milanp

How is your daughter feeling now that she has finished 6 chemo treatments? Will her doctor be following on her progress in the near future.

I hope to hear from you again.

Teresa

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@colleenyoung

Hi @maisyann, welcome to Connect.
I’m tagging @kjs1015 @aamarion @diana63 @djzlady96 to see if they will return to talk about their experiences with Non Hodgkin’s lymphoma.

Maisy Ann, when were you diagnosed? What treatment are you getting or have you had?

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I hope she will do well. NHL is highably treatable.

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@vonbaron36

I was diagnosed in 2014 with follicular lymphoma. I had radiation for a tumor on my neck. My last pet scan in 2017 showed no cancer since.

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I finished chemo in March for NFL. Just recently I found a large lymph node along my jaw line. Biopsy shows it the same form of NFL which is good. Doctor is recommending raidation.wjat side effects should be expected?

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@vonbaron36

I was diagnosed in 2014 with follicular lymphoma. I had radiation for a tumor on my neck. My last pet scan in 2017 showed no cancer since.

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Hi, jjohnson8747. I wish I had info about your treatment, but I was treated with R-CHOP only. I'm sorry that nasty node appeared at the jawline and hope they zap it for you. Good luck and sock it to 'em. gp

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@vonbaron36

I was diagnosed in 2014 with follicular lymphoma. I had radiation for a tumor on my neck. My last pet scan in 2017 showed no cancer since.

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@jjohnson8747 So sorry you need added treatments for your NFL. It does sometimes take a combination of both Chemo and Radiation together to rid the disease. Radiation can effect each person differently. Some do not have any side effects and others do. It is hard to say if you would experience anything at all. Here is a link to Mayo clinic's site that talks about Radiation therapy and the side effects of radiation.

https://www.mayoclinic.org/tests-procedures/radiation-therapy/about/pac-20385162

I wish you the best.
Jackie

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