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Hi,.

Thank you for that post.

I know this site has really helped me emotionally & practically.

Mike has been very supportive, especially telling me what questions to ask.

I met up today with lovely `Fruitloops` from the Breast Cancer site.

All have overcome so many problems this cancer throws our way.

The only thing we can do is one day at a time & accept every offer of support & help wherever we can.

Thanks again. Will know more Monday, hopefully they have got it right this time.

Scilly

Hi John,

I was diagnosed by a hospital in a main city.

I will not name this on main site.

Dealt with hospital over last few months for PET scans, MRI, CT, 2 bone biopsies, etc

Was overseen by a Professor!

I have good faith in my haematologist, he has contacted me to see if hospital had been in contact for appointments, phoning me at 8 pm at night.

Scilly 

Hoping Monday brings the answers you need and a plan that leads to you catching a pause from the rollercoaster ride.

sending positive vibes

John 

Hi to Everyone at NHL  who has helped with advice.

Haematologist is starting me on Velcade,  Dex steroids & Thalidomide soon as I have had a talk with nurse.

Apparently because the Drs etc were very slow at diagnosing my plasmacytoma these `lesions` were probably already there but too small to be picked up on scans etc.

Radiotherapy from way back has possibly had some affect on bloods.

The diagnosis was wrong mainly because no specialist haematologist at hospital! 

No excuse for two horrendous weeks for myself & my daughters.

Will update soon.

Best wished everyone, Scilly x

, a plan is a plan and this will give you a foundation to move this in a positive direction and some warm ((hugs)) to keep you going x

Hello Scilly. Colin here. the drugs you have mentioned in your post, I have no idea what

they are, I believe I mentioned in my post that I have only recently been diagnosed.

I only started my first course of chemo last week. I was so desperate to talk to people going

through similar, when I found this site. I have found it easier talking through this site than talking

face to face with people, (at the moment).

Both Mike ( the Highlander and John) responded very quickly, I just felt I am not on my own here.

I believe talking through this site, unites us in, we may have all different experiences of drugs, treatments etc.

 also just talking with each other must help.

Good luck. Colin.

Hi Colin,

I know of them only because of friends over the years who had them.

Velcade is the cancer `killer`.it cuts off blood supply to cancer cells.

Dexametasone-steroids and Thalidomide are anti-inflammatory drugs, help good cells.

I agree this site is excellent.

Friends do not, anyone who has cancer can be a really big help and a mine of info.

I have never had chemo, so I feel v apprehensive about side effects.Thanks,

Scilly

Hi Colin,

Just re-read this missed out words, oops!

Should have said ``Friends do not understand how we feel & what weird emotions we go through``.

Wide awake so mind more active x

Scilly

Hi. Colin, going back to your question re methotrexate, I had 4 intrathecally ...injection into spine. A bit uncomfortable but not painful. I was advised to drink plenty of caffeine as this reduces chance of headache. I laid on hospital bed for an hour with rolled towel under back to increase pressure on site. I didn't suffer any side effects. I laid down when I got home for a couple of hours.

Hello Haffygirl. Thank you for your post. I have my 1st Methotrexate injection tomorrow, cannot say I am

looking forward to it, only the possible benefits. I hope like yourself, I do not get any unpleasant side affects.

Before this reply I thought I would read your profile, wow you have been through some treatment and half and

still having more. I really do hope all turns out well, not just for you for everyone. all having their own battle.

This is all new to me, the illness and treatment, so very apprehensive about everything at the moment so post's 

like yours are really helping, just a little reassurance from anyone is much appreciated. 

thanks again. keep in touch. Colin.