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.
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.
@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
@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
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.
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
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 . 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.
@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
@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
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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.
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1 Reaction@ginpene05 I ran a support group at my local hospital and we used to talk about our new 'normal'.
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2 Reactions@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
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2 ReactionsJackie — 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.
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Helpful -
Hug
2 ReactionsI 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 . 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.
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2 ReactionsWhat does the O in o-chop stand for? I had R-CHOP
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1 Reactionobinutuzumab, it fairly new and for large b cell lymphoma.
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2 Reactions@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
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2 ReactionsTurns out I was developing a yeast infection in my mouth, thrush, it's pretty miserable, but the medications are working.
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2 Reactions