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Affected by NHL? Join this group to share experiences and ask questions to people...
I'm so happy to have found this group! It is great to read the very well informed comments here.
I'm trying to figure out if I should be getting worried here. A bit over five years ago I was diagnosed with indolent follicular lymphoma and put on watch and wait. Then three months ago my creatinine levels were a bit high in my blood work. A month later, they were high again. My oncologist asked for a CT scan, and I just received a phone call saying he wants me in within the week. I don't know if this means a lymph node has grown but were are going to keep watching, or if it is the start of treatment. Is there any way to know, or do I just have sit on pins and needles for a week. Thanks! Wayne
Hi WayneSch and welcome to the Online Community but so sorry to see you finding us.
Talking with people on the same path can help a lot. My NHL was different with a long and complicated treatment journey but we all tend to go on the basic same direction.
The first thing you need to understand about Lymphoma is it’s not straight forward so best not to read into things and hold back until you see your Consiltant.
Actually the experts in blood cancers are Haematologists so don’t be surprised if you get referred on. You will most likely need a biopsy to be done on any areas as this is the only way to find out what if the 80 types of Lymphoma this could be.
So take each appointment as it comes.
You may also find our various Macmillan Support Line Services on 0808 808 00 00 helpful as you can talk to a friendly person that can help in various ways.
It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.
Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my cancer journey was rather long.
Akways around to help out.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Click to see how to add details to your profile
Hi Wayne, when you were diagnosed did they tell you where in your body you fnhl was as it possible the two issues may be unrelated, sadly you are going to have to wait until your appointment as anything we say would be pure speculation and that would be of no benefit what so ever.
Sorry that's not helpful but if you feel ok thats a good sign still, so even if it is active you may still have an option to remain on watch and wait as fnhl can wax and wane.
let us know how you get on.
Hi again Wayne, been a long day so ignore what I was saying about finding out the brand of NHL, I posted with a rush of blood and a glass of red to the brain ;)
As John has said, the best route is not to speculate and stick to what your team comes up with. From my long 20 years expeteance there are lots of tools in the treatment tool box.........now for a Singke Malt
I've added a bit to my profile now. The ideas of "don't speculate" and maybe they will keep you on watch and wait are wise if difficult to follow pieces of advice! I'm not sure what to think of starting treatment. At one level, I want to get it done; at another I don't want it to disrupt my family. My daughter and I were going to run a half marathon together in May, and I don't want to disappoint her, but I don't want this cancer growing in me either. I suspect, I will follow the oncologists advice and if he says let's start treatment now, then I'll throw myself into it.
When I was first diagnosed I am pretty certain they did say I had a lymph node in my neck and one in my abdomen. Four year in a couple lymph nodes in my neck really grew (from 1 cm to 3-4cm) and then stopped. Now at over 5 years, I have this creatinine level issue. I hoping for the wane part of of "wax and wane" !
The unexpected is hard to take - I basically spent 14 years waiting for my skin Lymphoma to get aggressive and when it became aggressive I was taken by surprise as I had become used to living without thinking what if?
The one thing I did learn quickly was my team were ‘on it’ all the time and were always one step in front of where things were going,
Thanks! I helps that I do trust my oncologist who seems very thorough.
waiting is the hardest part, in a way I was lucky and my lymphoma was aggressive so it had to be treated and I had good specialist nurses, who would always ring with results. The only blip on the diagnosis f was when I returned to see the surgeon who has said after surgery, I will see you in 2 weeks and we will tell you what type and what the plan is. I turned up and he repeated lots of info he had already given when in hospital and when I asked what type of lymphoma he said I cannot share that you need to see haematology I cannot steal their thunder. Needless to say I was peed off and let it be known, so I understand the frustration of having to wait. Why not make a call Monday if you have not been given an appointment yet. They do understand so normally are accommodating
I do sympathise about the waiting. I sussed what I had last August and it was a long seven months of blind alleyways & false optimism till I got into haematology and my treatment has just started. I think I read too much and scared myself silly!
If it's any comfort, most indolent lymphomas do seem to take ages to get to treatment - I read somewhere that 6 months was about average. And that's without a planned period of 'watch and wait'. You have visible accessible lymph nodes and a vigilant care team. They're on it!
I finished my chemo on 1st Feb and since then its been a bit up and down but finally I feel as if its all coming together, higher energy levels but with a couple of side issues, ie pins and needles in my legs and a bad back, but for me thats ok as I feel well.
I'd not worry about having treatment, but if they say it'll start soon then I think that your run will have to be put aside, unless of course you feel up to it, its amazing what some people can do!
Good luck with your appointment
In the end, it's not the years in your life that count. It's the life in your years. Abraham Lincoln
"I cannot steal their thunder." !! Ya, I'd be peed off too. I have an appointment for Wednesday afternoon. I have my fingers crossed!
Best of luck with treatment! I too read too much, and then not at all. When I had a partial diagnosis (my team knew I had a lymphoma but needed to send the biopsy off to determine which type) I got on Dr. Google, convinced myself that I had the worst of types and I would be dead in 18 months. Then when I found out I had indolent follicular lymphoma I was scared to read anything lest I cause an anxiety disorder, LOL. I'm starting to calm down now.
Fantastic! I'm glad you feel well. Of course, wondering what side effects I'd have is the major concern. It sounds like you are doing fine! My wife also said running the half-marathon with my daughter may have to wait if I go into treatment. That is would be ok. We ran her first two together, so it isn't like I'd be missing out on her first one.
Thanks for wishing me luck. I'll let the group know the results!
You seem very positive now and in my opinion thats half the battle, the other is a belief in your team, it makes life so much easier.
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