I feel a fraud

General chat
21

It’s great to have this forum as we are able to support each other always x

3 Likes
22

I’m happy to have found this forum. Everyone here is so supportive and friendly.

5 Likes
23

@Macymae123 yes, this forum and it’s blogs and support have really helped me too.
You have just helped me realise I am not the only one to have bad days, that is such a good feeling.
Look after yourself and be kind to yourself

3 Likes
24

Hi
I have iron restricted PRV, I too get bouts of depression, a
Lot of people are like us, some don’t even realise they are suffering from depression. I get out in the open air, or go out to lunch with friends, sometimes life gets rather impossible but usually things improve. Now you know what makes you better, watch for the warning signs and apply your remedy. Sometimes I just have a good moan on this forum, they are always very understanding and full of kindness. Marylin

3 Likes
25

Aww you are not a fraud …you have ET ,my husband has it also .we now how you feel
This is a great site with lots of support and advice … take care of yourself ,it takes time
To come to term with it all .
Smiddys wife (Mary )

2 Likes
26

How are you doing @Adw265?

1 Like
27

I’m doing a lot better thanks. They have reduced the amount of blood removed from 500ml to 250ml and will now only be doing this every two weeks. Not far until I reach the Haematocrit level they want.

1 Like
28

That sounds for the update @Adw265. I’m glad things are going in the right direction :blush:

1 Like
29

Hi @Kevan7 I have been thinking about you and just wondering what is happening with you.
Look after yourself

30

It’s too early to say but thanks for asking.The radiation treatments seem to have killed the infiltrate in the skin to an extent but it takes a few weeks for it to die off.I have a nasty feeling that it’ll be back in about 6 months however (based on previous experience rather than pessimism!).The corrupted Mycosis Fungoides cells will just replicate themselves and I can’t quite figure it out but I think that they come from the bone marrow and mature in the thymus and on out into the body to work their mischief.They mainly home in on the skin apparently but sometimes they can, usually in advanced cases,go for the internal organs and if they do they survival is rather poor similar to pancreatic cancer rates.

2 Likes
31

Please keep us updated, I have read your other post too
Look after yourself

1 Like
32

Hi @Kevan7 how are you doing now?

1 Like
33

Thanks for asking.I had biopsy last week of a lymph node that looked suspicious so they have sent it off to see if it’s just reactive, like the others,or if the Mycosis Fungoides has infiltrated it.I expect that I shall hear something at around the back end of this week?

1 Like
34

Hi @Kevan7 hopefully it’ll a good result for you.

1 Like
35

Hi @Kevan7 how are you and did you get the result you wanted?

1 Like
36

Well in a way!No Mycosis Fungoides was found in the lymph nodes but extra nodally it’s spreading across my skin at a reasonable rate of knots.Very little stops it and so far of all the things they have tried only radiation stopped it although only for about a year.I don’t think that drugs like Interferon Alpha and Methotrexate,etc have any effect but obviously you can’t tell what it might have done had you not been on them?

2 Likes