large B-cell lymphoma

[Larwil]

My name is Larry soon to be 63, thanks for allowing me into your group. I was diagnosed with diffuse large B-cell lymphoma in March of 2016, It developed in my lower jaw effecting 2 teeth which were extracted. After all the scans and test for staging, it was determined that the lymphoma was local to that area only and staging was determined to be stage 1 with no other B symptoms. I under went 3 rounds of R-CHOP starting in May 2016 with 15 sessions radiation starting in August 2016. I have had 2 followup appointments with my Oncologist and so far so good. I found the chemo to be more tolerable then I thought it would be and had a harder time with the radiation due to being very catastrophic. At this point (although not a long time) things seem to okay, but as many of you know and understand it is always on my mind and some days and nights are still difficult. Thanks for the opportunity to speak to the group!

[wmay13241]

Hopefully you will not progress but if you do consider CAR-T. Lots of good CAR-T information at: lymphomation.org/programing...

[R-16728]

Hi Larry, name's Dave

The waiting can be tough. Take each day at a time and try to eat well an get fit. Life will continue to be rewarding. I've been eight years in remission with two sets of chemo and currently a very expensive pill called zydelig. Life is good. I have a few side effects but I manage to enjoy all that I should expect after 74 years.

[Tinkerbellcgy]

Hi Larry, from one Diffuse Large B Cell lymphoma patient to another. Mine is Stage 4 and in 2012 I had an autologous stem cell transplant from which I remain in remission. Because it was Stage 4, radiation was not an option in my case. I also have Follicular lymphoma which was first discovered in 2008 and treated with R-CHOP. I relapsed in 2016 when I was treated with R-B (Rituximab + Bendamustine). Final chemo for that was in mid-November 2016 and I am in remission once again.

My advice to you would be to live your life as normally as you are able to and try to fill you thoughts and life with positivity. I understand this is not always possible but the more you work toward this goal, the better quality your life will be.

If you should have any questions about living with cancer(s) I would be happy to answer if I am able to.

Liz

[Larwil in reply to Tinkerbellcgy]

Thanks Liz for the advice and for taking the time to reply, Larry

[Susieflora in reply to Tinkerbellcgy]

Hi pleased to meet you in the group. I too had NHL 4 in 2012 but fortunately it was the common type and I have been in remission since end of RCHOP. Do you take any alternative medication to help your immune system. You are very inspiring. Susie

[Tinkerbellcgy in reply to Susieflora]

Hi Susie,

If it is me that you are asking about immune system alternative medications, the answer is that I have monthly ivig transfusions. (Intravenous immunoglobulin) They are plasma (antibody) transfusions that aid in boosting my immune system which was wiped out in preparation for my stem cell transplant.

After transplant, my immune system never wholly regained it's ability to fight infections and even with the ivig transfusions, the best level I attain is usually only 50% of what it should be.

Thank you for the compliment that you find me inspiring. It is very much appreciated.

[Larwil in reply to Susieflora]

Hi Susie, thanks for the reply, no I have not taken nor was I prescribed any alternative medication, I try and stay active and weather permitting here in Ontario Canada I walk about 3-5 times a week for a distance of about 6 km each time. I try and eat better but that seems to be more difficult then the walking, love my food!!!! I had a follow up appointment with my Radiologist today Jan. 23, things went well, blood work was all good but my blood work has always be good even when I was first diagnosed it all good, MRI scheduled as a follow up before my next appointment in May with my Oncologist, at this point I alternate between my Oncologist and Radiologist every 3 months. enjoy life, thanks Larry

[Glenmeadow in reply to Tinkerbellcgy]

Hi Liz! It really helps to see someone has two things. I have stage 4 nodal marginal zone and I also have myelodysplastic syndrome. It freaked me out that somehow I was going to have to try to beat two things. I'm very New and I'll get the hang of it

[Tinkerbellcgy in reply to Glenmeadow]

Hi Glenmeadow,

I don't know that there are a great number of people who have more than one type to deal with but rest assured that it can be done. You will get the hang of it and before you know it, you'll be well versed in how to best deal with the challenges.

All the very best to you.

Liz

[Dlindquist54 in reply to Tinkerbellcgy]

Thank you!

[krayburn Partner]

Hi Larry, welcome to the NHL Friends group Happy to have you here!

[Dlindquist54]

Welcome. I check in only once in a while. I am 63 too. I also had rchop, 6 sessions. No radiation. I was diagnosed in early 2013. Found cancer in 2012. Thought it was ovarian cancer, then pancreatic due to location in stomach area between the uterus and pancreas. Effected my breathing as the fluid from tumors leaking was placing pressure on lungs and I got to where I couldn't breath when laying down. I had a respiratory code after being admitted to the hospital. I was drained of fluid in 2 hospital stays and then biweekly until it was gone. Chemo started with first hospital admit and then every 3 weeks after. I took Native American herbal medicine to help me before and through the chemo. I take a herbal Native American medicine now to help with immune system.

A friend had a similar cancer on her face and neck ...needed radiation. I was glad I didn't need radiation because of how she described it.

My every 3 month appts. were all good. I switched to every 4 month appts. after a couple years. Too much at 3 months. Too much worry.

Way better at every 4 months. My oncologist continues to say, "treatable probably not curable."

I walk an hour to 70 minutes now, have lost some weight. Cut back on sugar. Adjusted my diet to be something that helps my diabetes and cancer. My husband juiced for us regularly for a few years. Now it's hit and miss :o) Have some plants and air purifiers to take the toxins out of the air. Live in farm country where roundup is used. I was in the urban area when cancer started. We moved up north when my husband retired in 2012.

Hope a cure is found for all cancers, similar to the pill found for Hepatitis C. My husband had that and I guess they used to treat that like cancer. Now it is a pill for 8 weeks. He had slight drowsiness and that was it.

Take care now.

Denise

[jack23]

Hello Denise, I am wondering if you would be willing to share the name of the herbal product you use to boost your immune system. I feel as though mine could use some help as I am never very well, despite good check ups at the cancer clinic. I seem to get everything that goes around, and never really recover totally. Having had a cancer that is immune system related, it makes sense to me that that area might be struggling. Thanks for this,

Jackie

[Dlindquist54 in reply to jack23]

I totally understand as I have 26 grandchildren. Someone's almost always sick, getting sick or getting over something. It's an herbal tea. Essiac/ezzeac. Zeller's Natural Health sells the concentrate in Blackduck or Duluth Health Food Store has the herbs. I buy a bottle a month from Zeller's and mix 2-3 tablespoons a day of the concentrate in water (hot or cold). When I would miss taking it for a day or two, I got sick.

Ingredients: burdock root, sheep sorrel powdered, slippery elm bark powdered, turkish rhubarb powdered. You can google for recipes.

Zeller's also sells with Cat's claw and my internal medicine doc said I should get it without cats claw.

the health food store mixes the ingredients together and you cook it yourself and strain it (ask for cooking instructions as it is time consuming). It hasn't been as concentrated as zellers when I've made it.

Do not use without doctors okay! Mine have okayed my use of essiac.