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.

@travelgirl

@jjohnson8747 Ugh I'm so sorry ..Last we spoke you were tired and dragging yourself to do things. Was that the only symptoms, you being tired?
I think though if I'm not mistaken, the lady across the hall from me the same thing happened to her.
She was given treatments and is fine today. She is in her very late seventies. It has been about 5 years now and she hasn't had another occurrence..
Hang in there stay positive and keep pushing yourself. I will pray it all works out for you..
Jackie

Jump to this post

Thanks Jackie! I'm feeling down and this helps😁

@seekhealth2016

I would like to know more about your operation’s details and the food that
helped you.

Jump to this post

Personally I found fresh fruit… Especially berries, berry milkshakes, and Asian food the easiest to eat. The umami really helps when you can’t taste much!

@jjohnson8747

I have the results of my pet scan. My Lymphoma is back and aggressive. Doctor thinks it may have morphed to large cell. Biopsies scheduled for this week. 🙁

Jump to this post

I am sorry to hear about the recurrence. Do you doctors give you hope with different chemo? Do whatever you like or enjoy, and god luck with the biopsies. gp

I get results on Tuesday, I'll let you know what I find out.
In the meantime, does anyone have ways to deal with night sweats, I had to in one night!

@jjohnson8747

I get results on Tuesday, I'll let you know what I find out.
In the meantime, does anyone have ways to deal with night sweats, I had to in one night!

Jump to this post

@jjohnson8747 How are you feeling? I am just popping on to see how you are doing? Have the night sweats gotten any better?

Hi. I am in England. I was diagnosed with Follicular NHL in August 2000. I had to start treatment as I was stage 3 as my GP had said I was having an early menopause – I was 46 at the time). I had 5 rounds of FMD as Rituximab was too expensive then. I went into molecular remission. In 2011 a lump came up on my head. My GP said it was a cyst but it grew so large I was referred to the Sarcoma specialist. Long story short it was extra nodal NHL. I had bendamustine first but the tumour regrew and I had radiotherapy. Two years ago I started with abdominal pain and only a slightly enlarged spleen was obvious on an ultrasound. I was diagnosed with IBS!! Forward to this August and I started having pains in my left side and between my shoulders. A new GP sent me for an ultrasound which showed a Splenic Cyst and slightly enlarged liver. I have also had a colonoscopy and that was clear. Hopefully I will get answers after the CT scan and seeing my Haematologist next week. My night sweats started in 1995 and I have had them eversince – so empathy to you all.

@ginpene05

For the nausea I took Zofran and Phenergen and ate smaller, frequent, small portions. For the exhaustion I have never gone back to my pre NHF level of activity. I have gotten used to doing less. To be honest, I still take the anti nausea meds because I can't stand to eat otherwise. But I have had intractable nausea since early 2013. When I got diagnosed with the NHF tumor in the small intestine in 2017, and they removed it and did R-CHOP, we all thought that the nausea would disappear. No such luck. But I feel fortunate to not be worse, so onward and upward.

Jump to this post

@ginpene05 I ran a support group at my local hospital and we used to talk about our new 'normal'.

@bordercolliecra

@ginpene05 I ran a support group at my local hospital and we used to talk about our new 'normal'.

Jump to this post

@bordercolliecra Welcome to connect and thank you for sharing your story. I agree Lymphoma is a life changing disease.
I find myself questioning every little illness or issue i get, on account of having lymphoma.
I think i find myself more aware and immediately want to tackle the issue just in case it related lymphoma. I am finding so far nothing is on the account of lymphoma.
I also have severe Gerd. The Gerd is more troubling than the lymphoma lately. Ugh.. I need to have my throat scoped. But I won't lie, I worry they will com back and say this is on account of your lymphoma.
I hope your CT scan results come back good. Would you mind posting how it all turns?
Again Thank You for joining connect and sharing your story.
Jackie

@travelgirl

@bordercolliecra Welcome to connect and thank you for sharing your story. I agree Lymphoma is a life changing disease.
I find myself questioning every little illness or issue i get, on account of having lymphoma.
I think i find myself more aware and immediately want to tackle the issue just in case it related lymphoma. I am finding so far nothing is on the account of lymphoma.
I also have severe Gerd. The Gerd is more troubling than the lymphoma lately. Ugh.. I need to have my throat scoped. But I won't lie, I worry they will com back and say this is on account of your lymphoma.
I hope your CT scan results come back good. Would you mind posting how it all turns?
Again Thank You for joining connect and sharing your story.
Jackie

Jump to this post

Jackie — where was your initial lymphoma primarily? I too have had issues with GERD post aggressive DLBCL and finally did the scope…came back gastritis from all meds I have to take post two stem cell transplants. As hard as it is…better to know earlier when treatment might be easier.

@jjohnson8747

I get results on Tuesday, I'll let you know what I find out.
In the meantime, does anyone have ways to deal with night sweats, I had to in one night!

Jump to this post

I now have B Cell Lymphoma. I'm getting O-chop chemo. Just finished 3rd round. 3 more to go and then a possible stem cell transplant. Question, has anyone gotten a sore mouth and not been able to taste much. Any ideas to help

@jjohnson8747

I now have B Cell Lymphoma. I'm getting O-chop chemo. Just finished 3rd round. 3 more to go and then a possible stem cell transplant. Question, has anyone gotten a sore mouth and not been able to taste much. Any ideas to help

Jump to this post

@jjohnson8747 . Hi, Although it is nearly 18 years since I finished my first chemo I remember not being able to taste some things. I found that drinking bitter lemon was a good flavour that I could taste and also sun dried tomatoes. I would sometimes cook something in a slow cooker with a strong smell so that I couldn't enjoy that even if I couldn't taste it. Beef was like cardboard and I couldn't taste coffee or beer!! Good luck.

What does the O in o-chop stand for? I had R-CHOP

@ckeys

What does the O in o-chop stand for? I had R-CHOP

Jump to this post

obinutuzumab, it fairly new and for large b cell lymphoma.

@jjohnson8747

obinutuzumab, it fairly new and for large b cell lymphoma.

Jump to this post

@jjohnson8747
Thank you for explaining what O was with CHOP. Getting my initial treatment with R-CHOP, I had minor changes in my taste buds. They got the most impacted when I had radiation to my neck and lower jaw area. The main chemotherapy thay impacted my taste the most were platinum based,like carboplatim (sp ?). Hoping you get a speedy recovery and your taste buds return. It was probably the most concerning part of all my treatment as I am a real foodie. Fortunately, most of my taste returned, it just took time

Liked by jjohnson8747

@ckeys

@jjohnson8747
Thank you for explaining what O was with CHOP. Getting my initial treatment with R-CHOP, I had minor changes in my taste buds. They got the most impacted when I had radiation to my neck and lower jaw area. The main chemotherapy thay impacted my taste the most were platinum based,like carboplatim (sp ?). Hoping you get a speedy recovery and your taste buds return. It was probably the most concerning part of all my treatment as I am a real foodie. Fortunately, most of my taste returned, it just took time

Jump to this post

Turns out I was developing a yeast infection in my mouth, thrush, it's pretty miserable, but the medications are working.

Please login or register to post a reply.