Peripheral t cell lymphoma

Hi Lorna and welcome to the group though sorry to see you joining us, yours is one of the rarer types of lymphoma and there have been a number who have posted over the years with this type, but not sure how many are still around and posting. The is a T cell group though it is quiet, you can search to see others posts.

this is the link https://community.macmillan.org.uk/cancer_types/t-cell-forum

There is also a smaller charity called lymphoma action who have a range of support on offer you can see it here https://lymphoma-action.org.uk/support-you in this link and you can see what that support is, including a buddy system where they can put you in touch with someone who has the same type as you. They also have a range of support groups and an online offer which you may find helps you to talk to others with PTCL.  

I had DLBC which is a different type back in 2009, my treatment was rchop and it may be you are offered chop as a treatment, have a look at the information here at Macmillan and at Lymphoma Action it may have answer some of the questions you may have, but do also ask here, there are a few of us who post regularly 

john

Thank you so much for your reply I have been on the lymphoma action website I will take a closer look. I hope that you are now doing well. Thanks again.

Hi Lorna87 and a second welcome to this corner of the Community. As John says Peripheral T Cell Lymphoma is one of the rare types of Non Hodgkin's Lymphomas and as John has said there have been a number over the years come through the group.

If you put Peripheral T Cell Lymphoma into the search tool  near the top and search in [everywhere] you can see the older posts and as always you can hit reply and see if the folks are still looking in.

I was diagnosed with another rare type of T Cell Lymphoma way back in 1999. The treatments available have been developed over the years so lots of tools in the box.

You will see from my profile (hit my name) that I was stage 4a.... its is important to 'get' that in Lymphomas a stage 4 should not be seen in the same light as in other cancers. Staging is used to mainly pinpoint the best treatment that should be used and for how long.

The Lymphoma Action site has lots of good information, videos and run regular regional online Lymphoma Online Support Groups and indeed a very great Lymphoma Buddy Service where you can be linked up with someone who has walked the same treatment journey.

We are ways around to help out and answer questions.

Thank you so much for taking the time to reply. I hope you are doing well. I was diagnosed last Thursday I'm 34 have 3 young children and although I had been prepared to have this confirmed as lymphoma its still a tremendous shock all the same. 

I am doing great. now over 6 year into remission - that is amazing for me as back in 1999 when I was first diagnosed I was told I would never be in any remission longer then 6 - 9 months

I was diagnosed at 44 but most likely had my condition for a good number of years before it was diagnosed. I actually took a good 14 years before I needed full on treatment but was having weekly skin treatment 2-3 times a week for 20 weeks a year....... hard work but still was woking through this.

Once you get some clear information and plan to move this forward the noise between your ears will start to turn down and things will be more understandable and you will see the way through this ((hugs))