Praying and believing

[sophiedee2017]

I joined because my 42 year old son was recently diagnosed with large B-cell non-hodgkins lymphoma. He also had a bowel obstruction and his intestines were ruptured. It's a miracle that he's alive! I have a question, as he is to start chemo on Tuesday. I think it is called R-chop? Would it be safe for him to drink alkaline water? Would it take away from the chemo results? I appreciate any thoughts on this....Sophia

[Butterflyfree]

I would ask his doctor, I went through the same ,minus the bowel issues.(prayers for a speedy recovery),

[sophiedee2017 in reply to Butterflyfree]

Thank you so much!

[sophiedee2017 in reply to Butterflyfree]

Thank you so much!

[Shar0n Volunteer]

Hello Sophia,

Welcome to NHLFriends. Sorry to hear that your son has to go through this but the chemo has a good chance of shrinking the tumours that have caused the problems. I wish him well with it. I'm sure there are others who have had R-CHOP here and they may be able to tell you more as I haven't had it myself. However, I would certainly recommend that you try and get an answer from your son's medical team on this as they would have a list of things that they don't allow in conjunction with chemo eg vitamin C being one. If they don't allow it at this time, they most likely will when the treatment is finished and then you can concentrate on building him up and strengthening his immunity.

The site lymphomasurvival.com run by Robert Miller has a lot of information on going through R-CHOP and might be useful. The man who runs it has had the treatment himself and is very knowledgeable.

[sophiedee2017 in reply to Shar0n]

Thank you for that information. I will be sure and check it out...

[wmay13241 in reply to Shar0n]

Patients Against Lymphoma (lymphomation.org/#what-is-new) and Leukemia and Lymphoma Society (lls.org/) are also great (and FREE) lymphoma websites.

[nellynaim]

Hi Sophie, sorry for your son. I was diagnosed with Large B cell Lymphoma subtype ABCD of the small bowel in July 2015. I had the R-Chopp and Lenalidomide which is a trial medication and not sure its effect. I'm ok so far. I don't know about the alkaline water benefit?

[sophiedee2017 in reply to nellynaim]

Thank you so much. May you become better each and everyday!

[oncloudnine]

Sophiedee-Sorry to hear about your son. I was diagnosed 1/2016 with LBCL. I had the R-Chop chemo regimen and radiation treatments. I won't sugar coat it, R-Chop really put me through the wringer, but you do what you have to do. I have been in remission now for seven months, and will hopefully remain in remission God willing. I wish your son the best of luck, it's a tough road, but a road traveled by many.

[sophiedee2017 in reply to oncloudnine]

Thank you for sharing about this. I pray for your complete healing!

[Traceeb]

I don't want to scare anyone however, my husband recently passed away from DLBC NHL the subtype being ABC (aggressive B Cell) This type of lymphoma is very hard to treat and resistant to most chemo. He had R-CHOP when he was first diagnosed, but remission was short lived. He had all the other standard of care protocols used when the cancer relapses but failed every one. Towards the end of his life we heard of a test you can get done at a company in Massachusetts called Foundation One that will look at over 400 mutations in your tumours and find out what mutations are driving your cancer. They found 9 different mutations and only one drug agent that was a possible match. It was Venclexta a CLL drug. Once we discovered this we approached our doctor who helped us to reach out to her drug rep that enrolled him into the Venclexta program. But firstly, we had to try and get the drug as is was not covered by our healthcare system. We tried our private insurance company who rejected it on the basis that is was not a lymphoma drug. The next step was to approach the drug company directly. They approved it after only 2 days because they saw we had this special test done and saw that the mutations were a match to this drug. Unfortunately by the time the approval came through my husband was too weak and sick to even have any treatments and passed away less than a week later. This is so heartbreaking, but I encourage others to look into this as it may save your life and save you the heartache of being a guinea pig by subjecting your body to needless drug agents that may or may not work. If we had known about this testing at the beginning of his diagnosis we would have went this route to begin with.

[nellynaim in reply to Traceeb]

is the mutation test is a blood test, and can I do it if I am in remission and how much it cost if you remeber. I have the same subtype but in remission after the 1st episode in 2016

[Traceeb in reply to nellynaim]

It's called HEME test and it's a tissue biopsy of tumor, however I believe they do blood testing as well. The test we had done was $6000 USD. Here is the website. foundationmedicine.com/

[nellynaim in reply to Traceeb]

Thanks, however a tissue biopsy is difficult now as I'm in remission but i'll ask my specialist when I see her for review in September

[1Anj1 in reply to Traceeb]

Hi traceeb

I'm sorry for your loss. This bit of info you told everybody may well save someone's life. Hat tip

My brother has TCHR BCL and we had 5 cycles of rchop, it came back

3 cycles of rdhap and a stem cell transplant, it came back.

Gemcytobine and cisplatin and a donor stem cell transplant and he is just hanging on.

The reason I believe it keeps coming back is a) the mutations and b)sanctuary sites.

It's a tough condition to beat.

[Traceeb in reply to 1Anj1]

Take a look at this video. I believe you need to pressure your doctor to look into liquid biopsy to see what is driving the cancer!!! youtube.com/watch?v=-X3cUgJ...(Not working as expected?)

[l-al]

Yes,ask the doctor. I had since 1994 stage 3 and have been doing fine. Its not been easy but lots of support and prayers ha e helped. My best for your son. By the way, I'm 82!

[sophiedee2017 in reply to l-al]

That's amazing! God bless you! Keep Jeff in your prayers if you would. Thank you...

[Mrjackwagon]

The power of prayer, positive thoughts, natural remedies, vitamins ands herbs, cannibis oil, chlorophyll water, chemotherapy, stem cell transplant, immunotherapy, reiki, massage, essential oils, sunshine ☀️ and lots of love from family and friends.... one day at a time. Thanking God each day for keeping me moving and my mind free from worry. This disease challenges every part of your well being and treating your mind, body and spirit helps get through each day -- when the disease is active or when you have the glorious days of being disease free. Always Praise God.