Newly diagnosed

Hi Flames Fan and a very warm welcome to the online community

I'm not a member of this group but I noticed that no one had come forward yet. Replying to you will 'bump' your post back to the top of the discussion list. I'm glad you're finding the posts here extremely helpful and I'm sure the other group members will be happy to share their experiences.

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hey

I too have been diagnosed and am awaiting a consultation at Basingstoke .I am a breast cancer survivor and cant believe that I have been diagnosed with this rare disease on top of my previous illness. Overwhelming and so frightening but this forum has been amazing in supporting me ....

Hope we can be in touch and support one another xxxxx

Morning , my partner received the bad news 2 days ago and I’m doing all I can to find out about this rare type of cancer , I found this site purely by chance abs I’m Jjst heartbroken abs don’t know what to do and I’m trying to stay positive but it’s hard as I’m sure your aware my lovely ! Stay strong and fight fight fight ! There’s not much reading on this particular one so hoping I can get info on here so I can help him x

Hi Nikki,

I was really sorry to learn of your partner's diagnosis and can understand how you must both be feeling right now. I don't have PMP but the other type of appendiceal cancer - mucinous adenocarcinoma - which is similar. I was diagnosed just over two years ago.

With regard to getting further information, you may like to take a look at the following websites. The first is www.acpmp.org Also, there is www.pseudomyxomasurvivor.org You may also like to take a look at the work being done by an Australian physician called Professor David Morris. He is developing a drug to help with the treatment of PMP. I would really recommend that you find out as much as you can about this man and what he is doing.

In addition to the above, the Christie hospital in Manchester - who are specialists with PMP - also have some information on the disease. Their web address is www.christie.nhs.uk 

I tend to find that when trying to locate information on-line about PMP it's useful to search under the heading 'appendiceal cancer' as this tends to bring up more/additional options.

I do hope that the above helps you to find what you feel you need to know right now and to bring you both some degree of support at this most trying of times.

Please do feel free to message me whenever you wish if you think that I may be able to help with anything else.

Hold firm.

I wish you every blessing and comfort as you begin to navigate your way together through this challenging experience.

Saxon.