Oddlyhappy

Hi Amy, how things going? Hope your battle is going well.

Andy

Hope you are doing well with your treatment. You might ask the hospital staff if there are any resources for transportation. That has to be a rough trip home. Prayers for a speedy recovery and pain relief.

Thanks for your comments and concern. It was super tough being hit with both events during the holidays. Would love to know how your treatment affects you as that is the really scary part of this right now for me...Take care and be well....

Hi Amy, saw that you started treatment, hope it all goes great, I was on the Rituxin (combined with Treanda) and it did what it was supposed to do and with minimal side effects.

Love your screen name and your attitude!

I post only on WhatNext and try to offer something informative or positive to say gained from my fifteen year cancer journey. For you to see more of my posts I suggest you go to the WhatNext Pin Board and in the upper left side of the screen click on NHL link.

Since you are in watchful waiting and having discomfort I suggest you consider the elements of complementary medicine. You have mentioned acupuncture and there is massage. The one that gives me relief is Mindfulness. You will find my post on this under the NHL link.

My wife had two cancers and one took her life. In addition she was plagued for years with unnamed pain and discomfort. The cause finally was found to be Lupus. It took a lot of effort over time to get a diagnosis. I suggest you keep an eye out for opportunities get information from research organizations, results of clinical trials and second, third or more doctor’s opinions.

Good luck on your journey.

Hi Oddlyhappy, I guess you have discovered by now that follicular lymphoma is not as bad as it first seemed. In April it will be ten years since I was diagnosed, Stage IV also. I have a more than full life since then including a mission trip to Armenia.

Hi Oddly, how things going? hope you are still feeling well

Hi Oddly, would say welcome to whatnext, but looks like you have been here for a little while, welcome anyway. I see that you have already run into Dan7264, GREAT guy, always has good things to say. Hang in there and hope your battle goes well, feel free to ask any questions that come up. I found a lot of greeat support and some fantastic people here.
Andy

Welcome to the club. Sorry, guess that is not funny, is it? Well, like it or not you are one of us now. I found a website that is all people and info for Follicular Lymphoma. Of all the things I have found this is the best resource tool. Also there is a forum there and the people are super knowledgeable. Most have been in remission for several years, some even 25+ years! So plan to die from old age with this kind of lymphoma, not from the cancer. Here is a link to that site.

http://lymphomasurvival.com/

There is much to learn but the first thing to know, of all the cancers and blood diseases a person could have, you have one of the best ones. Doesn't sound like much encouragement does it? That is like saying you have the best house in a really bad neighborhood. But honestly, as cancers go, this kind is slow growing (not aggressive is good), very responsive to both chemo and radiation.

We only have so many silver bullets (treatment opinions). You want to start with the least aggressive first and then step up slowly as needed, don't use your big guns first. So watch and wait is perfect.

It used to be that everyone that had fNHL got RCHOP right out of the gate. RCHOP is very effective, BUT, it can only be used once, and it will hit you hard. More recently (Last 5 years) a lower grade chemo Treanda has been found to be effective with less side effects and it can be used again if there is a relapse after 6 months to a year and you responded positively to it the first time.

Rituxan is an anti-body that is often given with Treanda or even given alone. It builds cells that fight the cancer cell growth. Sounds good but it has side effects, avoid prolonged treatment of this for maintenance (prolonged like two years). A lot of people do get this for a maintenance drug but there is tons of doctors saying that using it as maintenance is harmful to your immune system and will keep it suppressed and in some cases may permanently suppress it.

There is lots to learn and read - but you will do fine. It is scary at first but find as many other fNHL people that you can both here, online and even on Facebook and talk to them. You will see it is a cancer you can live good and you can live long with.

Hang in there!

When I was newly diagnosed like you are now here is what I most remember. My doctor told me that my cancer was treatable and the treatment would inconvenience me.

I suggest you keep those words in mind and be proactive in being patient as there is no advantage in hurrying the process. It takes some doing to get you into treatment. There will be time needed for appointments for lad tests of different types. These are for your benefit as they allow the doctor to insure you get the proper treatment. It may be watch and wait or it may be treatment. If it is treatment once you get into that things become more of a routine.

Remember you are a survivor from the day you are diagnosed.

I am holding good thoughts for you. Good luck on your journey.

Hi Oddly Happy......Just wanted to say Hi and ask if you have ever checked out this site below AND his facebook page.
Two good books are Radical Remission by Kelly Turner PHD
and The China Study.

http://www.chrisbeatcancer.com/

I have Marginal Zone NHL and it was stage 4 and just decided NOT to even go to an Oncologist at all.
You can check out MY Profile and Journey Page for what I'm doing. I was diagnosed Last September with Lymph nodes in neck and groin and PET Scan showed them in Abdomen, Spleen and under the arms ( Couldn't feel them)....
So that's my story....Watchful Waiting is ok...BUT start A search on Nutrition, Juicing and Anti Cancer Supplements......I have and had NO symptoms other than the nodes that all still there.....some larger and most the same size. I did ask my Surgeon Friend to take one out in my groin as It was getting large and it made me nervous.
HOPE you don't mind reaching out to you and suggesting a few things.
Good Luck!!!!!
Barry

Hello and welcome, we are glad you found us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/non-hodgkin-lymphoma-nhl

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

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GregP 3X Survivor
Team WhatNext Community Mgr

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter