Hi guys i,m still trying to get my head around whats happening to me,
Some doctors are saying its the best type of cancer to have if you have to have it,
people are telling me its a chronic disease and you die with it and not of it can anyone give me any information on the above ?
How long can you be on watch and wait for?
thanks Alan
I've been on watch and wait for 17 months, I have Cutaneous Anaplastic Large Cell Lymphoma. I have been told I may have had this 10 years before diagnosis and most likely will live with this the rest of my life and odds are it won't kill me. It might, bit odds are it won't
I’ve been on Watch & Wait since August 2015. NH Follicular Lymphoma Stage 3 Grade 2. I’ve been told some have been on W&W 20 years.
I was on watch and wait for 12 yrs. I finally had to do 6 RCHOP treatments and have been in remission since the 3rd treatment. You look young and healthy so just keep taking good care of yourself. Exercise, eat a lot of whole food plant based foods, meditate, and enjoy every day.
What are some of your daily health issues?
I don't have any health issues. I run 4-7 miles daily and swim 1.25 miles 3x a week. I look and feel better than when I was younger. All the FL issues disappeared after 3 R-CHOP chemo treatments. They make you complete 6 even when you go into early remission.
Hi Geordie Al,
Welcome to NHL Friends. I'm a volunteer here and try to welcome new members and post links to interesting research on NHL when I come across it and also any health related issues that I think might interest our members.
I was diagnosed with FNHL in 2014 at age 59 and have been on watch and wait since then. The diagnosis has changed my life in many ways but thankfully so far mostly for the better in that, apart from the lymphoma, I am healthier than I can ever remember being. It didn't happen overnight but gradually as I made small changes to my lifestyle.
It's obviously a great shock to be diagnosed with any form of cancer and the mental aspect takes some time to come to terms with. It's definitely a process and different for everyone.
What has helped me the most is the decision to become as healthy as possible by finding exercise that I enjoy and removing the rubbish from my diet. This means I will be better equipped to cope should the NHL return or become more aggressive. Currently I still have raised lymph nodes in my neck but they haven't increased in size . I go for checkups every four to six months and have one coming up in a few weeks.
So, there's a lot to be optimistic about with this illness when you are on watch and wait as you can use the time to improve your health and the mental has followed the physical for me anyway.
Later on when you have your head around it you might want to look at this site written by a long time survivor of FNHL, Robert Miller. He has had treatment twice but is now clear of active disease and has a huge amount of scientific information and support for patients. There is a small annual subscription to cover admin and research but he never turns anyone away.
Hope this post isn't too overwhelming for you . Just take it at your own pace, a day at a time.
Here's the site I mentioned : lymphomasurvival.com/
Hi alan - yes all that you heard is true. When I first got diagnosed I cried for a month and then as I got used to it and read more I fell fine...
Im on watch and wait for three years now.....no treatment
I had one node removed on my neck....
my stage is 1 and my grade is 1.
Im very positive im gonna to beat this and have read of people being on Watch and wait for 15 years. Ive had no symptoms and felt fine.
What happened to you?
thank you all for your reply I,m trying to start a green diet and green smoothies what do you guys put in your green drinks please
I DRINK them just once in a while I would say spinach, kale and fruits...I drink a powdered green drink. What stage are you at?
Alan we may have a disease in common . Stage Iv FNHL. I go back to my oncologist in 2 months. In the meantime I am juicing, mild exercise, working on getting rid of chronic constipation. Monday I am starting myself.on Ip6 a high B vitamin and CBS. HOPEFULLY at the time of my next scans there will be some improvement. But, I am not familiar with either one of these.
Have you tried a probiotic for constipation? I have underactive thyroid of which this is a symptom and find probiotics helpful with no harmful side effects. Good luck with working on improving your health. Exercise helps everything if you do a bit every day.
Oh yes, LOTS OF WATER AND WORKING ON REDUCING MY PH LEVEL WHICH IS 9. IT SHOULD BE 7.5 FOR HEALING AND RHEN 7.3.
Alan, i was diagnosed in april 2018 and i have no symptoms apart from enlarged nodes. On watch and wait. For the first few weeks i was doing all the research i could on it. So much i became a bit obsessed which isnt good. I have accepted the diagnosis now and have got a bit more healthy with exercise and eating. To be honest i was always pretty healthy, so i have not changed things drastically. The main thing is just continue living your life with maybe a few changes. Try not to obsess about it, as it doesn't do your mental health much good. Don't forget about it. Just make checks every now and again to see if things have escalated any. My doctor told me it's natural for the nodes to increase and decrease several times and that is why they don't do scans every few months. Anyway, once you get your head around it you will realize that there are a lot of people living normal lives with it. Good luck
i have got the same been in partial remission for 18 months after chemo which means i am stuck with it and have to make the most of it - so far not too bad but my maintenance treatment stimulates the bowels! its unpredictable no cancer is good for that reason. my main concern is how do i know if it has come back?. my general health is good i take pills for high blood pressure though which is normal. i dont know what to say really you look really healthy! best wishes tony in leicester uk
When to expect a reoccurance of large B cell lymphoma and what is the treatment?
After effects after chemo
Lymphoma and autoimmune conditions
Follicular non Hodgkings lymphoma stage 2