Hello. My name is Shanna and I have just joined as I have been diagnosed with Follicular Lymphoma in my chest

Hi Shanna and a warm 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 Follicular Lymphoma (FL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable, ‘other type’ of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Are you going straight onto treatment or are you, like many who are diagnosed with a Low Grade NHL (and indeed for me in the first 14 years) been put on Active Monitoring (Watch and Wait)  as your condition has not developed to a point that it need immediate treatment?

I am sure you have questions so do ask them and someone will help you out.

They want me to start chemo immediately but there is a question round whether they are going to remove myself last 10 teeth. I've been trying unsuccessfully to get a top denture for 3 years so not confident about them removing the last ones on the bottom gum. 

It's putting me off chemo as I have no symptoms of Follicular Lymphoma. My face had been swelling and I went for an x-ray and was told I had inoperable incurable lung cancer that had spread to my lymph nodes then 17 days later they said oops it's only follicular lymphoma. 

I much preferred the first diagnosis as I would welcome death with open arms. I don't have a family or children like you to live for and I've been suffering from chronic depression and severe anxiety for 30 years 

Your experience leading up to getting your diagnosis is actually not that unusual as at times Lymphoma is very hard to pinpoint.

The first line treatments used for FL are very effective but at times there are some Side Effects of Treatments but back in late Dec 2013 I had 6 cycles of very strong chemo and I was actually ok during it all…… but in my case i was always going onto further treatments.

The teeth challenge is unfortunate but again it can happen at times….. let’s look for a clear plan to be put in place.

The journey always sounds impossible but it can all be done……. with great results.

I am sorry that you are facing this on your own. 

You may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Thank you Mike. Your cancer journey has been horrendous. It took a long time to read and I'm sorry you've been through that but your positivity is remarkable. I struggle to see anything positive in my life because of the dysthymia but I appreciate the links you sent and hope you and your family are well 

No need to be sorry for me....... I will always say that I would much prefer for me to have gone through the journey rather than someone else.

I was just 'taking' with a group of people on one of the Lymphoma Action support groups and there were a few folks you could definitely identify with as they have been in the exact same position as yourself and are now going through treatment and have been through treatment and are slowly navigating into a new normal life.

Some have severe Dysthymia...... but they are pushing through and doing ok.

((hugs))

Thank you. I'm having difficulty accessing any group chat 

Do have a look at this link to the Lymphoma Action Support Platforms..... I highly recommend these groups…… and consider their Buddy Service where you can be linked up with someone who has walked the same treatment journey.

Dysthymia is a chronic condition. You can't have severe Dysthymia. There is no such diagnosis but thank you for your help. I'm not sure this community is for me. It's not what I thought it would be. I wish you all the luck in the world but I'm thinking of not having chemo and just take my chances 

It sounds like you have transformed follicular lymphoma.  FL is not generally treated unless it transforms to a more aggressive type of lymphoma because there are lifetime limits on some of the drugs used for chemotherapy.

I had enough swelling to deform my face and interfere with my vision, but it started to improve in the pre-phase period before I had my first infusion.

Hi Shanna “severe Dysthymia” is what people have said in conversations but as I have no experience of this then so as in many aspects of life you just have to take people at their word.

I am sorry that the community is not what you are looking for. At times finding a support platform that suits an individual can be challenging but keep pushing the doors and I do hope you can access the support you are looking for.