Reply With QuoteThoughts are with you.
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My Mrs has just been told she has Hodgkins lymphoma,but she will not have any treatment until it warrents it.I have looked on line but i just can not get my head around it.Does any one on here gone through it and if so please tell me because i am in bits it is as nothing is being done.
Thoughts are with you.
I can absolutely sympathise and empathise with both of you. I was in a similar situation 3 years ago when I was diagnosed with a type of Leukaemia called CLL (Chronic Lymphocytic Leukaemia). The only 'famous' case I could find was ironically Mike Peters of The Alarm. That gave me great confidence having seen his hectic touring schedule.
So I then had all the blood tests, biopsies and scans before the day came for the results. They warned me to bring someone with me. I feared the worst of course, and after explaining the whole situation and my GF getting quite upset, they then said 'Ok, off you go. See you in 4 months'!! I was now part of the Watch And Wait you speak of.
It's honestly nothing to fear. It's a tried and tested method as with these illnesses, there is absolutely no benefit to the patient being treated early. You can live perfectly normally, with some never needing treatment, hence the W+W.
Any queries you have, then I'm happy to answer them. I'll add more shortly when I'm on my laptop, including a brilliant forum.
Sorry mate - not got any first hand experience but I hope you get a good outcome. Remember stay strong for her as well as yourself.
Sorry to hear this. Stay positive, both for yourself and your missusOriginally Posted by jeepster
Thanx.
I second this.
Have a look at this charity organisation
https://www.patientpower.info
Patient advocates, an amazing resource for information from patients. These guys are the bridge between Pharma, Doctors and Patients.
all the best mate
This was a great source of help to me in the early days, and although they are different conditions, I think you'll both get a lot out of this forum as I did. There are literally thousands of people on there from all over the world, offering updates, advice, support etc.
I used it avidly at the start but just realised I hadn't logged in for over a year as I'm now comfortable with it all.
This is the forum, and I've just noticed this covers almost every condition over specific forums, so may be useful for others on here too:
https://healthunlocked.com/
While we're on the subject, one struggle I had was with travel insurance but these guys were an absolute godsend and they really understand specific conditions:
https://www.world-first.co.uk/
They're experts in health it seems, plus are incredibly reasonable and easy to deal with.
This board is so full of nice people,thanx to every one for all the web sites to look at.I will go to bed and give my Sian an extra hug and a kiss to night
A relative was diagnosed with stage 4 Hodgkins Lymphoma 5 weeks ago. She has to undertake 6 courses of chemotherapy with each course spread three weeks apart. She's done two so far, and says in the two days proceeding each course she felt quite debilitated. Her hair is falling out at an increasing rate. But is looking better and becoming stronger each day. Unbeknown to doctors she's also taking one 400mg Vitamin B17 capsule daily.
I may be wrong, but is this the same that Steve Mcphail had?
Its one of the more positives cancers you can get if you understand my logic.
Fingers crossed for a positive future.
sorry to hear your bad news dude
My brother had it a good few years ago, he was on the NHS and had private insurance, when he found out, he went online and did a shed load of research, found the guys details who is one of the worlds leaders in it, E.mailed him and had a reply back in a day or 2, turns out he did some work out of a hospital in Kent ( where he lives )
If you want me t get him to cal you for a chat, PM me your number and i will get him to give you a call
Simon Insole was diagnosed with this , then survived a couple of decades . I am sure an early diagnosis will help , velindre staff are amazing . Good luck
Some good advice here already, stay positive jeepster
The two women I know who had it, beat it and are still going strong 15 years later if that's any help.
Jeepster, I sincerely wish you all the very best of luck my friend.
When I had my prostate cancer scare three years ago, my biopsy was arranged for the day after what turned out to be Ole's last match in charge - a Tuesday night 1-0 defeat by Middlesbrough. Initially, I was pleased to have a match to watch to distract me, but City were so woeful that night, I was joking to the bloke who sits behind me that I was starting to look forward to the biopsy which couldn't be anywhere near as bad as City were!
Anyway, my point is that, after I'd spent the half time interval talking about the fact I may have prostate cancer (I didn't), the bloke who my friend had bought along and I'd not seen before, quietly mentioned that he'd had the thing I was fearing for years. He told me that his consultant had said the best thing to do with his cancer was have a biopsy every year to check it had not developed and leave it at that - he was told that the consultant thought that it was such a slow growing tumour that it didn't warrant treatment.
The relevant part for this thread was the thing he said towards the end of our conversation - he was so comfortable with the arrangement that he'd only ever think about his cancer in the few days before his next biopsy was due and, even then, he only did so because of the procedure involved (I found the biopsy a little uncomfortable, but nowhere near as bad as some of the horror stories I'd read online made it out to be).
Mention of my biopsy takes me on to the Health Unlocked site. It was, by some way, the best forum I visited during that time, because it did so much to put my mind at rest about both the biopsy and what was to come if it turned out I did have cancer - I still use it at times regarding my atrial fibrillation and can only endorse what you have to say about it.
Last edited by the other bob wilson; 26-05-17 at 05:24.
Stay strong Jeeps, all the best mate
Hope your relative continues to improve, but why isn't she telling her doctors about the vitamins that she's taking?
Steve McPhail had a MALT Lymphoma which is a type of non-hodgkins lymphoma. My dad is currently being treated for this.
He was on watch and wait for ages - it's actually a good sign in that it means that the lymphoma is not aggressive and is slow growing. They will regularly monitor for progression and offer treatment if necessary.
The reason for watch and wait is that the effects of the treatment can be worse than the effects of the disease itself. Your wife could be very lucky and it may never progress further than it is at the moment and may never actually need treatment.
The downside of watch and wait, we found, was that my dad was always worrying about it and becoming miserable about the condition. It always seemed to play on his mind that he wasn't getting any treatment, thinking things were getting worse, when in reality there was very little progression. Now that he is being treated he is a lot better, not because it's working (we don't know yet, he's only had one cycle and is having his check up today before cycle 2 next week), but because he knows he is being treated.
He's been told that his lymphoma isn't curable but is manageable and isn't likely the thing to knock him off his perch.
I know how worrying it is for you, and the not knowing is really difficult, but there are plenty of people out there to talk to and discuss your worries with. If you're really desperate for someone to talk to you are more than welcome to give me a buzz at any time, I'm more than happy to chat and try to allay any worries.
Like others, I'm so sorry to hear of your wife's illness. I must confess I know very little about it, but as far as I understand it, whilst serious it looks like it is treatable http://www.nhs.uk/Conditions/Hodgkin...Treatment.aspx
Thoughts are with you and your family mate.
I agree with everything you say about the board being full of nice people, they certainly came out of the woodwork when I had a bit of a crisis. Just look after your Mrs and Im sure you will both come out of the other end smiling eventually. I hope everything has a positive outcome.This board is so full of nice people,thanx to every one for all the web sites to look at.I will go to bed and give my Sian an extra hug and a kiss to night
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