About to start targeted radiotherapy on face

Hi again Michelle Michelle0811 let’s see if anyone who are looking into the group can reply with any first hand experiences…… I have posted my experience in your other post.

As big as this Macmillan Community is the various Lymphoma Groups can at times be slow….. This may well be due to the popularity of Lymphoma Action.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run various Support Platforms. I highly recommend these various groups as this will widen your support base significantly.

There is nothing better than talking with others who have walked or are walking the same journey and this can be done on their online support discussion platform that has over 5500 members…… as well as their many monthly Zoom Support Groups……. you may well bump into me as well as I have volunteered with them first a number of years.

They also have a great Buddy Service where you can be linked up with someone who has navigated the same treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

((hugs))

Thank you Mike!

I will go to Lymphoma Action now before I forget as my memory is shocking and you have probably mentioned this to me before - I’m sorry. 

Many thanks,

Michelle

For the Facebook discussion platform you must answers all the joining questions

Thanks Mike,

That is the one I have just joined and been accepted. I like it because I don’t want the rest of my family and friends on there. I know that might sound strange but I just need to listen to people who are and have been through it. 

Just a quick one, but my hospital offers immunotherapy and because I’m so scared of all the side effects because I can’t swallow well now and haven’t done for a few years because I can’t produce saliva due to medications. The radiotherapy is meant to make this worse and I don’t know if it possibly can! I was told off twice by a nurse and a doctor for drinking 5 litres of water a day!

Many thanks, Michelle x

Yes you are now in the LA group and it was me who accepted you.

5 Litres is a lot !!!!…. my aim is 3 Litres a day.

We will most likely talk again on the LA group.

Hi Mike,

Thank you for accepting me! 

I just have a question. For you or anyone else and I’ll put all the info from yesterday’s appointment at Leeds but could you please tell me if you have ever heard of anyone having extreme (I’m in pain a lot but this will not go away until I’ve had my oramorph which I never take anyway!) muscle or front of shoulders where they go into the armpit spasm pain. It’s so intense the pain goes down the arm and makes my arm feel warm. 

I was just wondering if anyone you know or anyone on here has experienced any sort of pain like this. 

I’ll copy and paste my message (sent to family and friends) to you about how yesterday went at the hospital. 

Many thanks 

Michelle

Hi Michelle Michelle0811 when I had the brick sized mass in my neck (left side) it had gown around and trapped nerves and muscles and the pain was off the scale, radiating across my body but also up and down…… and yes spasms and hot……. and oramorph could not touch it so I had to take the evil tramadol.

Thank you Mike, I actually had to take a diazepam in the end (I was prescribed them last year for the loss of my Dad but have also had them prescribed before for this type of pain). It makes me feelike I daren’t move. It’s so intense that it goes into my chest area and down my arm. I’m presuming if it was a heart attack I wouldn’t have the exact same pain in both armpits ‍xxx

So this is how my appointment went yesterday. you might need a cup of tea!!  I just don’t know if something has happened since I had the PET scan a few weeks ago.

Thanks again Mike - you really are a god send xx

Message I sent to friends and family yesterday:

Hi, so just been to see the Consultant to talk about radiotherapy. It’s the best news we could have so far. At first he wanted to give me 12 radiotherapy treatments so 1 x 1/12 of the dose each day. But because of me producing very little saliva he wants to do 2 x 1/6th of a dose then scan me in 3 months. If it is still there then I will go back to the 12 treatments. So he is treating me with a view to it being cured or in remission. He said it is if you have lymphoma in various parts of your body they say it’s incurable and they would watch and wait. I really don’t understand that part.

So it’s the best news we could get. So in a couple of weeks I get an appointment for a scan and mask fitting. (She rang today and it’s next Wednesday). 
Then 2 weeks after I have 2 radiotherapy appointments.
Three months after treatment a PET/CT scan. If it is still there, they will go back to the original 12 treatments.
But they are treating me with a view to hopefully curing. A few side effects because they are radiotherapying the whole saliva gland but we are hopeful. He said that the 12 treatments cure 8 out of 10 people and the 2 apps cure 7 out of 10. Apparently this new 2 appointment treatment has taken off in America and they are calling it the Boom Boom treatment ‍xxx ️️

All the best to you. My follicular lymphoma is in a lymph node in my groin. No evidence anywhere else. My "simulation", where they get everything set for radiation treatment is in 2 days. The plan for me is 2 grays for 12 days. I'll check in after the simulation. While its not curable, it can be beat. Keep good thoughts. Can't hurt. I'll report back after the radiation treatment #1.

Good morning,

That’s so kind of you. Thank you. Good luck with it all. I hope they get the little gremlin (it’s what I call mine!). 

Thank you again,

Michelle