The Report : Stage 4, Cell B, Follicular, Non Hodgkin's Lymphoma, 5-16-18

[BLP1211]

It is in my bones (a little), pelvic area, under arms, chest, stomach a lot and a collection by my Pancreas.

I was offered chemo with or without Ritusan. I am going to investigate other natural options. Good news..it is not in my brain.

MY doctor says the large swelling of my stomach and thighs are not caused by the lymphoma. I am fatigued and was having over 2 years a lot of mucus and phelgm which has been reduced to 10% . I am itching like crazy just in the last 4 evenings.

I have to have a redo on my colonscopy; but the PET SCAN SAYS THE COLON IS NORMAL ALTHOUGH I suffer from chronic constipation.

MY juicing of vegetable beets, celery, kale, carrots, apples, spinach, radishes, garlic does make me feel better and gives me energy.

PLEASE REPLY TO ME IF YOU HAVE/HAD A SIMILAR SITUATION. THANKS.

[Judyhoneycomb]

Sorry to hear your news. I was diagnosed April 2015 with Stage IV, NHL Mantel Cel... Mine was in my bone marrow, all lympnodes from ears to groin. And spleen was enlarged. I did go thru what was called RCHOP and then Rituxin for 2 1/2 years. Am in remission. I also was fatigued, bowel movements not regular and had to be on stool softener. I recently read that bowel's can have neuropathy too from apparently chemo.Then neuropathy in feet and fingers set in and he had to take one of the chemicals out of my mix because it will cause neuropathy. Low potassium, very dry skin, and fatigue over whelming. Appetite diminished and nothing tastes good. Recently found out B12 is very low and just got my first

B12 shot plus will take supplement by mouth. I didn't do a lot of research in the beginning, I just put my trust in our wonderful Cancer facility here. I had complete faith in my oncology doctor and team and they got me thru and listened. Plus I had many people praying. I adopted the phrase FROG... forever rely on God... So I pray you will be cured and brought back to good health. 🐸 I am to old for any kind of bone marrow transplant...

[BLP1211 in reply to Judyhoneycomb]

Thanks for your info and prayers.

[wmay13241]

I recommend you visit two good follicular lymphoma sites at nhlcyberfamily.org/types/fo... and emedicine.medscape.com/arti...

[BLP1211 in reply to wmay13241]

THanks for the info. Keeping everyone in pray.

[BLP1211 in reply to wmay13241]

I re-read this. It is even more meaningful now that I know more about my condition. Thanks again.

[wmay13241]

The good news is that a majority of follicular lymphoma patients achieve a long remission with R-CHOP or BR. However there are an unlucky ~20% that have an aggressive form of follicular lymphoma.

In November 2011, at the age of 64, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016. As of May 19, 2018, she has been in complete remission for 26 months. Clinical trial studies show that CAR-T cells may result in long-lasting remissions for some people who have follicular lymphoma. There is more information on CAR-T for fNHL patients and people considering CAR-T at fnhlben.wordpress.com/

Other non-Hodgkin lymphoma sites I visit often are:

lymphobob.blogspot.com/

lymphomation.org/#what-is-new

lymphoma.org/ (look for free "Ask the Doctor" meetings near where you live)

lls.org/

[BLP1211 in reply to wmay13241]

Thanks.

[BLP1211 in reply to BLP1211]

Today is day 10 with CBS AND IP6. I started with 10 drops of CBD in the AM with one scoop of IP6 in 8 oz of water each AM. One day I had 2 scoops of IP6, one AM and one PM. I had too much energy the next day. I RETURNED to one AM scoop.

I was only sleeping 6 hours per night, but feeling good each day. I wanted at least 8 hours if sleep. This week I am taking 6 drops of CBD in the AM and 6 drops in the PM, only one AM IP6 . Sleeping 8-9 hours.

So far my bowel movements have improved greatly. I still have itching occasionally. My arthritis has improved 95%. I am stiff at times. Some of my stomach and thigh swelling is gone.

I will continue to increase the CBD oil gradually as long as I feel like I am improving. I will return to my doctor the middle of July 2018.

[Butterflyfree]

I wasn't given the option to chose ritusin,it was with my chemo.I was constipated with little relief.

[Judyhoneycomb]

I too have dry, dry flaky skin, and since I started the B12 shot, plus the supplement I have really noticed a difference in appearance of skin and feeling coming back some in my feet. As I said before I did the RCHOP, plus rituxin and was stage lV with enlarged spleen, all lympnodes from neck to groin, plus in bone marrow. Treatment brought me thru to remission for now... So I hope you can get some treatment and healing will come to you...

[BLP1211 in reply to Judyhoneycomb]

How are you doing? I haven't had traditional treatment yet. I am stage IV, NHL, Follicular, cell B.

[Karl60]

I am a big fan of RCHOP chemo for diffuse B Cell NHL. I had stage 4 last October, I have had 6 sessions of RCHOP and 2 of Methatrexate and an in complete remission. Please don't abandon the chemo in favour of 'natural remedies'- take them as well if you like- but please keep on with the chemo.

[Judyhoneycomb]

I had RChop first and then radiation on tonsil when came back. Just finished chemo Benadistine and Rituxan last month. Had PET scan this week and am in remission. Hope the best for you.. I believe prayers from others brought me thru.. Amen

[BLP1211]

Thanks. Congratulations!! Great news.