Radiotherapy treatment for nhl - Non Hodgkin's Lym...

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Radiotherapy treatment for nhl

Shelley73 profile image
14 Replies

Just wandering if anyone out there has had anything similar to my situation...? I had some B-cell symptoms (sweats and fatigue)and lumps under my arm pit which resulted in stage 2 low grade follicular NHL being diagnosed in may this year.

Treatment so far has been just radiotherapy, 15 sessions, which finished back in July 2016.

I'm on follow up appointments now every 3 months....no testing undertaken...just a conversation on how I am feeling?

is this typical?

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Shelley73 profile image
Shelley73
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14 Replies
Gerbil007 profile image
Gerbil007

Hi Shelley, i think they call this watch and wait, to see if your symptoms return, do you not have a blood test before you see your oncologist?

Best wishes

Paul

Shelley73 profile image
Shelley73 in reply to Gerbil007

Hi Paul, thanks for the reply. The oncologist didn't mention it was watch and wait, just that we would have catch ups every 3 months to see how things are going. No blood tests are taken either. I have my next session next week, do you think I should ask about bloods and the w&w treatment method?

It's all a bit fresh and I'm learning what I can....i thought no bloods was a little odd though!

Shelley x

Gerbil007 profile image
Gerbil007 in reply to Shelley73

Shelley, I would ask about bloods, they can tell a lot from blood i have a test each time i go to see my specialist, mention watch and wait as you read about it in the macmillan booklet, see what his/ her response is.

Paul x

Josie2rulrs profile image
Josie2rulrs in reply to Shelley73

yes mention it

TezzM profile image
TezzM in reply to Shelley73

Yes I find it strange. The first thing my haematologist said to me last visit was " that's the best blood result I've seen in a while. So to him blood tests are important

avegan2 profile image
avegan2

I had NHL and had 6 R-CHOP chemo treatments and went right into remission after the first 3 treatments. I get blood work every 3 months and scans at least once a year. I do get stressed before blood test and scans. I always ask for copies of all tests to keep up with my NHL. Stay well!

R-16728 profile image
R-16728

I can't vouch for the radiation but "wait and see" is very typical in early stages. My "wait and see" lasted about three months then off to "chemo". Good luck.

wmay13241 profile image
wmay13241

My wife's oncologist said that 80 percent of progression is detected by the patient reporting symptoms such as fever, weight loss, and night sweats (not a complete list).

Shar0n profile image
Shar0nVolunteer

Hi Shelley, I always have full blood tests and a full physical examination. I am on watch and wait and back to the oncologist every four to six months.

Josie2rulrs profile image
Josie2rulrs

I am watch and wait stage 1 grade 2 NHFL

node removed. one involvement

but no radiation....just appointments where they take my blood and examine my body every three months.

JWphillies profile image
JWphillies in reply to Josie2rulrs

I just got your same diagnosis. I am hoping we have decades with no issues. I had a small amount in my bone marrow and small amount in lymph node. No symptoms. Plan to keep exercising. I do feel a bit more tired but I am older. 58. See Dr every 3 months and he does blood work.

Shelley73 profile image
Shelley73

Having seen the haematologist this week and having asked about bloods as part of my routine assessments it appears they are not an appropriate test method in my case - as mentioned above, by wmay13241, b cell symptoms are what I am looking for now going fwd. The radiotherapy has been considered successful and the doctor mentioned I am now in remission 👍.... But as we all know fNHL is notorious for recurrence but I feel happy I asked the question. Thanks for all of your feedback everyone, update in 4 months time after next check up!😉

Be strong everyone x

gardenFAIRY profile image
gardenFAIRY

I had 12 radiation treatments for relapsed Marginal zone lymphoma. I have a follow up scan on 2/23/19. Don't know what the process will be for me moving forward

Merrymary profile image
Merrymary

I had the same diagnosis as you with the same treatment, after I discovered lymph node in my groin . This completely shrunk the lymph node and never had anymore growth there..Unfortunately two years later I felt another one deep in my arm pit. Radiation again but this time it was just one lymph node and radiation only reduced the size. That’s been three years ago. I’m getting yearly blood work and ct scans. I now have b symptoms and scans show lymph nodes in various places. My oncologist maintains everything is fine but the modern age where I can review test and scans online, fine has become a slippery slope. I get no answer on what I can do to improve my immune health from my healthcare providers, and was told I was on my own with that. Which is great because now I am in charge of being as healthy as I can, I am in charge of my healing and have moved forward in that. Worry is useless to me and I live in the now . I hope this is helpful. Every journey is different. Don’t let the diagnosis control your life. Love and light. Everything will be ok😀😊

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