Please Help!

[Natalilali]

Hello Everyone! My Husband just had a diagnose of a Follicular non Hodgkin lymphoma stage 1 on his abdomen. The doctor wants to wait 6 months to do a follow up and he doesn't want to start any treatment right now, since my husband doesn't have any symptoms related to cancer. We are very afraid to wait those 6 months... We just started natural treatment such as IP6 Inositol, graviola pills, tumeric curcumin, Apricot seeds, eating healthy.

Any thoughts or advice would help a lot? He is 35 yrs old an we have a 1 yr old baby

[Russ70]

Hi,

It's quite unusual for them to wait 6 months to do a follow. My first three were every 3 months before they changed to it to 6 months. I have had no symptoms (night sweats, pain etc) since I was diagnosed Watch and wait (no treatment is quite common with Follicular NHL, since it is an indolent (slow growing) type of lymphoma. So that is fine, but I would ask the doctor for a couple of 3 month follow ups to begin with. It is a lot to take in at first, but don't worry quite a lot of people here are on watch and wait and lead healthy lives.

[lankisterguy]

Hi Natalilali,

This link leads to a group for CLL, but many of the comments can be applied to your husbands FL.

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healthunlocked.com/cllsuppo...

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I hope it helps you and your husband understand why not treat immediately.

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Len

[jmcobb50]

As Russ stated below Watch & Wait is very common with NHFL. I’ve been Stage 3 since August 2015 with no treatment however I do believe more frequent monitoring(every 3 months) is the norm. I was monitored every 3 months and was transitioned to annually only 9 months ago. Still get blood work every 6 months now and CT annually.

[Jean49]

LLS.org is a good web site with information and support. I agree with the others about watch and wait, etc. you didn’t say if the doctor is an oncologist; if not this is a good time to find one. Also, be sure to consult with your doctors about the supplemental/ herbals you are taking.

[Teddy811]

It is very frightening when first diagnosed. That said, I was diagnosed at the age of 28 when my youngest daughter was 3 months old. She will be 37 this November! When I was diagnosed in 1983 they only knew to use chemo and radiation. I opted out of treatment and did exactly what you and your husband are doing. I changed to a healthy diet and plenty of exercise, meditation and yoga. They did not know about wait and watch back then. I never went to the doctor for a follow up until 2017 when I had symptoms in my abdomen I was diagnosed with Stage 2 and have had 6 treatments with Rituxan. I lived for 34 years without it impacting my life, other than having more susceptibility to viruses. I am in complete remission at the moment. I know that this not everyone’s experience with FNHL, but it is mine and I pray it will be the same for your husband. All the best, Teddy

[Onedayatatime2 in reply to Teddy811]

Teddy811, what an encouraging story you have to share. Thank you

[LReznor in reply to Teddy811]

Hey there what stage and grade were you when you were diagnosed?

[Teddy811 in reply to LReznor]

When I was diagnosed in 2017 I was Stage 2. When I was first diagnosed in Feb 1983 I was stage 1.

[avegan2]

I watched and waited 14 yrs before 6 R-CHOP treatments that wiped out all lymphoma after just 3 treatments. I still had to complete all 6 treatments. I use Curcumin all through treatments and I still take it 3.5 yrs later. Apricot seeds made me sick and I was only eating 3 a day. I think they are full of arsenic. Exercise, diet, stress reduction, and meditation and prayer saved my life. Your husband can still lead an amazing life even with this diagnosis.

[Onedayatatime2 in reply to avegan2]

So encouraging, thank you!

[Potbellylelly]

Look on it as positive news. I have had the same . Diagnosed 2 months ago. I’m glad not to have to have chemo until needed. Healthy eating , stay slim , exersize and enjoy life . Xx

[Hidden]

It has taken me years to evaluate and learn about the possibility of being diagnosed or rather misdiagnosed with none Hodgekins Lymphoma ( folicular) lymphoma but not being diagnosed with Tubercular lymphadenitis. I saw the lady TB specialist who I had written to a couple of weeks ago. She enlightened me with clinical info this week when I saw her for consultation. Helen may well be interested to hear from that Tuberculosis specialist who is second to none in her professionalism that the researchers and therefore doctors but only

NOTE > CERTAIN DOCTORS knew that lymph nodes can be misdiagnosed visa versa with the above abnormalities decades ago & that includes the 1960 ties

It is crucial that in my opinion based on my lifetime experience of misdiagnosis that your husband is clinically checked for latent TB. If I were him I would ask your doctors in writing for the Quantiferon gold TB test which will prove whether he has antibodies for TB. That does not prove active TB but it does prove tubercular bacteria has been in his system and that further checks are needed to eliminate the possibility that the lymphs are not being affected by TB and are not Folicular Lymphoma..............

I am disconcerted to find that there is a cut off date for TB treatment here in the UK that is 65 years of age. That transpires to the fact that if certain criteria was adhered to I would most certainly have been offered TB antibiotics possibly in 1978 when I was 37 and later in 1990 when a superclavicular lymph none became active with what is seen to have been TB

and then in 1990 when my masenteric lymphs and others were diagnosed as folicular lymphoma when through evidence were nothing of the sort.

[Hidden]

Hi. This is fascinating. I had a biopsy taken of my lymph nodes and subsequent bone marrow, mri, ct scan. I have 20% proliferation in lymph neck biopsy and 60% proliferiation on bone marrow. I have 11cm tumour in messenteric lymph, 6cm tumour in aorta, and neck lumps. This is stage 4, grade a follicular lymphoma diagnosed by haemotology department in oxford, uk. Its been 7 months now and no progression. How would I know if this was a wrong diagnoses?

[luciabon]

I have heard a lot they tell wait and watch for FNHL but I always hear you have to check every 3 months. I have FNHL stage 2 they also suggested wait and watch but just for 3 months to be seen again. I dont know if 6 months would be a lot...

[21happy21]

Natalilali i was diagnosed April 11 2019. Watch and wait is a typical protocal for this type of cancer. Where are you located? Check with your local luekemia and lymphoma society they will send you information.