New to this Group

Hi  Carol  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have DLBCL but was diagnosed way back in 1999 with a rare, incurable but treatable type of Skin NHL (CTCL) Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.

Your diagnosis journey is not that unusual with the initial thought that it was one thing turning out to be Lymphoma - it happens a lot. 

As DLBCL is a fast growing high grade type of NHL then you may find they will move to treatment quickly but it may well depend on your stage...... I will highlight just now that unlike other solid tumour cancers like Lung, Kidney, Breast, Head and Neck....... where a high stage number is bad news - in Lymphoma it is rather different manly used to identify where the the condition is presenting, what treatment is needed and for how long....... I was stage 4a back in mid 2013 and I am still around doing great.

Unlike my type of Lymphoma the aim of the treatments used for DLBCL is to cure.

As for the driving......... this may well depend on the treatment you have. My treatment was rather full on and I was told not to drive during the 6 cycles as it would affect my reaction times when driving...... but many folks do drive.

Yes, the fatigue does tend to build up over time but remember that this is temporary and will pass.

Lets look for some of the group members to pick up on your post like johnr as he has walked this walk before and can talk about it from first hand experience.

I always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups and a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Always around to help more or just to chat ((hugs))

Thank you so much Mike, your lovely reassuring and informative reply means a lot to me. I did wrongly believe that the higher the number in stage meant it would be harder to treat and the fact that it’s high grade seemed scary too. I am glad your type was treatable, sounds like it  was successful and you’re doing well. Long May it continue to be the case and with research they will find a cure for the type you have. I saturated myself with head and neck type information and readied myself for surgery then chemo/radiotherapy combined now to be informed it’s Lymphoma which out of the two think it’s slightly better, if one can think/say that! I’ll be back on my quest for knowledge in a different direction now.  Thank you again and take care. Carol xx

Good that you found my initial post helpful. There are over 60 types and subtypes of lymphoma so compared to many cancers it is pure science.

Indeed research and treatment developments are happening all the time. In fact when I was first diagnosed back in 1999 I was told I would only be in remission for 6-9 months and this was true (hit my community name to see my long story) for 17 years but in Sep 2016 I was put into remission and remain in remission to this day.

I am not cured but our hope is that all my treatments has put my condition to sleep for a long time so I best not be kissed by a prince 

You will find the Lymphoma Action site excellent for good clear information, lots of podcasts, true life stories……. Take your time and work your way through it.

((hugs))

Hi Mike, what a worry (understatement) it must have been all those years ago but fantastic what science can do and has done for you and many many others. I will read your story with interest and oers too on the Lymphoma Action site.  Long May you continue in remission and definitely hope a Prince doesn’t get to kiss you Take good care  

Hi Carol

For myself being advised I had DLBCL  was seen as the first bit of decent news I had received since I was advised I had a cancer. The initial prognoses was not great.  

I was fortunate that from the first visit to Gp with not many symptoms of anything much (it had never occurred to me I may have cancer)  I started chemo 44 days later. 1st April 2020 so almost two years ago and all currently fine. Things did seem to take for ever at the time though, lots of scans and biopsy's etc.

How hard it will be ? I found it mostly ok, not easy but doable a big learning curve that after a couple of cycles of the treatment I was on just became very tedious with some big bumps along the way.

Stay away from Google if you can

Keep safe and good luck 

Thank you Garfields

Thanks for your reply, It seems I have the same type as you had. The PET scan was done today so I should find out the stage etc and treatment plan on Monday.  Although I really don’t want to go through the awful treatment I can’t wait for next week to get going and hopefully get rid! Very frightened but reading yours an others accounts of their journeys they all seem to get through it somehow some just have a much more difficult time than others. 

Thanks for the heads up and yes I made the mistake of looking at Google when the ENT consultant thought it was head and neck cancer and scared myself silly so definitely not doing that again plus there’s so much info on this and the Lymphoma Action sites that it should keep me occupied until Monday comes around.

Take care of yourself.  Carol x

Good morning Carol from a very white Narnia looking Inverness 

Good to hear that you are finding the Community and the Lymphoma Action site helpful,

To keep you "occupied until Monday" and in case you have not seen these, these links may be helpful. The first is about Questions to ask your medical team about Lymphoma and the second is a recording of a Webinar about Getting the best from your medical appointments

Hi Mike, hope your day in Narnia wonderland has been a good one.  Thank you for the information links which I’ve read and found to be very helpful. I’ll definitely be asking some of the questions listed.  Thanks again. Carol xx

Looks like someone is having fun.  Oh to be that age again xx