I'm a bit lost

Hi Amy Amy2002 and a warm welcome to this corner of the Community although I am always sorry to see you joining us and to hear about your dad's diagnosis. I am Mike and I help out around our various Lymphoma groups.

I don’t have Angioimmunoblastic T-cell lymphoma (AITL) but I was diagnosed way back in 1999 at 43 with another rare, incurable but treatable type of T-Cell NHL from the group of Cutaneous T-Cell Non Hodgkin’s Lymphomas (A very rare Skin Lymphoma - Mycosis Fungodes) eventually also reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

It is all such a challenge but it is important to understand that on the whole these Lymphomas are very treatable. 

Lymphoma is the fifth most common type of cancer in the UK after breast, lung, colon and prostate cancers and in these 4 first cancers a Staging of stage 4 would be a poor prognosis but these are solid tumor cancers...... in blood cancers like Lymphoma it's completely where staging is used to 1) to identify where the Lymphoma is presenting 2) what is the best treatment for his presentation and 3) for how long.

Do you know the exact name of the treatment he is having........ I had R-EPOCH...... treatments are often shown as a set of letters.

You may want to have a look at this link as it is a collection of thoughts about what people found helpful when going through chemo Top Tips for the day of your Chemotherapy

Always around to help more, just to chat or answer questions.

Hello Amy,

Welcome to the Online Community. I am very sorry to hear that your Dad has just been diagnosed. All your feelings are entirely normal and to be expected. There is no right or wrong way to feel in these circumstances and people on here will understand. 

We can not take away what you are both dealing with but hopefully we can provide some support. 

I will pop a few links on here that may be of help and sources of information.

-This link has some information on how best to support someone with cancer whilst looking after yourself as well. There are links at the bottom of the page with details of how else you can get in touch with Macmillan. You are very welcome to use the forum as much or as little as you need to but there is also a phone line or online chat feature if you ever want to speak to someone. They are really nice and I recommend them personally as they helped me through the shocked stage.

Supporting someone | Macmillan Cancer Support

-You have found the lymphoma forum which will connect you to people who have or are supporting people with lymphoma. It is a good place to share experiences and ask questions. The community is divided into groups and there is a group for Carers that I wonder whether might also offer support for you. I will pop the link down in case you want to have a look.

Carers only forum - Macmillan Online Community

Here is some information on the lymphoma that your Dad has been diagnosed with. As you say, it is a lot of information to take in at once and with all the medical terms etc I will put it on here in case you or your Dad would like some more information. I would recommend against googling as a lot of the information out there is out of date or inaccurate. Macmillan is up to date.

Angioimmunoblastic T-cell lymphoma | Macmillan Cancer Support

I see that your Dad is having a PICC line inserted this week to enable chemo to start. There is some information on chemo here if it helps. I had chemotherapy myself and although the thought was scary I did find knowing a bit more did help. The nurses that looked after me were lovely.

Chemotherapy for lymphoma | Macmillan Cancer Support

The last thing I can think of that may help is that your Dad will likely be assigned a CNS- cancer nurse specialist who will be able to support you both further. When Dad starts his chemotherapy at the end of the week they will also likely give him a booklet to note how he is feeling in and also a 24 hour phone number. Then if you have any worries you can call for advice.

Please do not be afraid to get back in touch if there is anything else you need. Hope this helps.

Take care

Jane

Hi Mike

Thank you so much for getting back to me.

Dad is starting CHOP on Friday after picc line insertion on Thursday. 

Having read your story it fills me with more hope than I had earlier. 

Thank you for the links, they are so useful, and I'll be sharing them with my parents. 

Thanks again

Amy

Hi Jane

Thank you so much for getting back me

The links are great, and thank you for answering some of the questions. I made the mistake of googling... I won't be doing that again!

Today's appointment was very overwhelming with information and at times it felt like the world had stopped turning 

He was assigned a CNS today who was lovely and have thought of a couple of questions I need to ask her about so will call her tomorrow. 

Thank you so much, I just feel so sad yet angry and shocked at the same time! 

Thanks Jane

Amy x

Hi Amy Amy2002 CHOP  is a very effective treatment and has been successfully used for year. It is normally done as a day out patient with his first day tending to be longer as they watch out for reactions.

My chemo (R-EPOCH) was very aggressive but it had to be as it was being used to open the window for going on to have Stem Cell Transplant so I was in hospital for 6 days/5 nights on my 2 IV pumps 24/7 for my 6 cycles and honestly I did ok with it all.

Nausea may be a challenge, but remember he must not to suffer in silence as there are lots of tools available - but his team need to know how he is getting on as at times it is trial and error to get the right one.

Cancer-related fatigue may well build up over time so he needs to take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less he does the longer the recovery.

There is a real Risk of infection so care needs to be taken to control infection contacts.

I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects the kidneys.

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 etc.

They run regular Support Platforms with a few groups specifically for Family and Carers...... 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 your dad 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.

((hugs))

All entirely normal feelings- sad, angry, shocked, overwhelmed.... 

I googled and scared myself silly at the time- my experiences were just not like that. I had a lovely CNS and she got used to me asking questions. I wrote down lists to help. The nurse team at my hospital had an answer machine that you could leave messages on and they would find out the info you needed and call back later. 

I am sure that Dad will be well looked after and having family support really does help. I know from having my son there for me and the rest of the family. 

Remember we are here if you need us

And good luck to Dad for Friday- let us know how he gets on

Jane