Angioimmunoblastic TCell lymphoma

Totally ok to post your questions as this is a hard time to get through and all and any help can help.

The only people who can tell you about the progress with regards to your husbands treatment is his team - so keep asking them for updates and make sure you understand what is next in their plans as if they think this are are not going well they will have further plans - talk with them.

As I was the patient I can understand where your husband may be coming from - at this moment he is not winning the mental battle. The longer it goes on the longer it takes to improve.

I asked my wife about your questions as she was the person who had to deal with the times when I was not eating and not wanting to get out of bed.

She reminded me that we made an agreement at the very start that when one of us was having a pity me party the other had to show ‘tough love’ I never had to do this to her, but she did it well - very well to me.

At times we were having discussions about where this was going and who we were doing this for, not just ourselves, but for our girls and granddaughters so she was always changing the pictures in my room and in the house showing pictures of the family including a scan picture of one of the girls who was on her way.

During the long weeks on the Stem Cell Transplant Unit she would be there at all meal times, breakfast, lunch and dinner making sure that I had some food. She made sure that she was around when my bed was changed (every day) to ensure that I was put on a wheel chair and put through under the shower for a wash. Then ensured I got dressed and in a seat - not my bed....... this continued over the four weeks in the unit and continued for months once I was home. Putting little plates of food under my nose and feeding me if I was being reticent.

It was some much work but with persistence and perseverance we cane through,

We do have these forums where you can connect with others supporting family and friends through their cancer journey: Carers Forum  and Friends and Family Forum it may be good to put up a post and ask your question as you may get more replies.

((hugs))

Hi Highlander,

Much appreciate your reply which i agree is very much a mental battle although he is very weak physically because he does not eat enough mainly-although he did have to have a couple of pints of blood on Sunday so he must have had a low heamoglobin count which would make him feel very weak. I have asked for the counsellor to come and see him as i do bring him food as your wife did but he doesnt always eat it which mkes me feel im wasting my time after a while. He doesnt want to shower or have a bath which he can have with a hoist as he doesnt want to be hoisted in and out of a bath. He is a proud and independant sort of man and very much feels ashamed i think of what he has become physically. Like i said I'm on a break, which by the way i would recommend to anybody else in my position, it has been really difficult to decide to leave him for a few days but has enabled me to have some space to think, grieve a little for the loss of my husband that was, even though he is still alive!! and feel a certain sense of normality. It is very difficult to find things that motivate him familly wise as our children are grown up and we dont have grandchildren or much likelyhood of having them so really he is sort of stuck in a hospital rut. i was very annoyed and upset when he refused to come home for the day as it is harder at home, as i make him eat and get up to wee and i think he feels safer in hospital surrounded by medical staff. i do feel i cant really do a lot more for him unless he starts to really take on board the challenge that he is facing. We havent even got to the stem cell challenge yet if ever as he is 69.

I do appreciate your reply and kind words they are a big help thank you! 

Hi again, I do hope you are feeling the benefit of your break. We were 9 hrs round trip away from home for 4 weeks during my first Stem Cell Transplant and 7 weeks for my second and my wife was in a small room next to the ward, it was hard for her so I did make sure that friends did the journey just to take her away from the unit,

My mental condition was ok, yes, I was very fatigued as the treatment does do this. My muscle wastage was very bad so I could only get around very slowly on walking sticks with someone with me and a wheel chair for any distance and once out of the unit we needed the wheel chair for 2-3 months.

It is hard to see someone struggling and it’s a struggle to see a way forward. But I am pleased that you are getting professional help for him, my wife says that although our staff were great she still had to keep an eye on consistently of approach so that I was living in a rhythm.

((hugs))

Hi Mike

I have returned from my break and feel much more refreshed having had time to process everything that has happened in such a short time. We are now starting our second round of GemCis which i am totally not convinced by as it seems to be doing him more harm than good but have said i will support him through whatever he wants to do as it is his choice. The consultant is giving him a lower dose this time as he has lost a lot of weight and his kidney function has been affected by the hypercalcaemia he had when he was first admitted and the chemo. I have been taking him food and he has been trying his best to eat it but is full very quickly and doesnt want to make himself sick. I have a renewed attitude having had a couple of days away and am going to try my best to be positive and take each day as it comes. I will be seeing the doctors and consultants tomorrow on their rounds and will be taking my questions and notebook as you have advised elsewhere on this forum as there are questions to be asked regarding his treatment. However I do feel that there is very little that they can say currently as having completed only one round of chemo so far they still dont know how the treatment is working all we know is that he is having many blood transfusions and is feeling pretty dreadful. So on a plus note he was very glad I had been away and had a break from it all and wants to get on with his treatment. I am wondering whether immunotherapy drugs would be the next thing to try so will be asking the consultants tomorrow what plan B is. They do consult with other hospitals in London Leeds Cambridge etc. so i am confident that they are trying their best but I at this stage cannot see as you say above what the way forward is. He is just so debilitated. Seems to be affecting his ability to understantd and follow a conversation as well. All sounds somewhat depressing doesnt it and actually it is depressing. many thanks for your support on this forum and your efforts to reply to my ramblings!!!!

Good morning, it’s so good that you feel the benefits from your time away, it’s often good to take a step back as you then are able to clear the head a touch and sort out what is important in all this.

Treatment does effect the cognitive abilities, during my main chemo I was very forgetful and slow to talk but that clears once treatment was finished.

Try to get clear information from his team as to how this is going to be taken in a positive direction, so yes, the note book is a great tool and don’t be talked ‘over’ you need to understand.

((hugs))

Hello Mike etc.

Find talking to consultants quite difficult as the rounds on the ward involve about 6 consultants a doctor the sister and a senior specialist nurse and they all chip in and it feels like thay shut you down and close ranks when you ask a question!!!!! GRRR Admittedly  the ward round is limited but my husbands consultant did say that he now has to build his strength, get out of bed more and eat more to build himself up for the next four weeks so the next stage is do the chemo, eat, exercise, move, have blood transfusions and then do a scan to see how the cancer has responded so we are now working on getting him home I have said he needs more proffesional help in getting back on his feet literally as he has a lot of muscle wastage. One of his problems is that he has lost all confidence and is very afraid of falling over plus he is quickly out of breath- they are going to do a new physio assessment and will implement a new care package before he comes home which is good but has anybody had rehabilitation before coming home? Thanks to anybody for any replies!

Ok, so good that they are looking to get some physio put in place as this will help a lot as it will highlight areas that can be improved.

Make sure that a clear care package is in place before it’s even thought about him going anywhere.

The conversations with consultants can often be a challenge...... we have found that the best person to arrange a meeting with is the Sister or his Specialist Nurse as they are more often have the time to talk.

You are doing great.

Hello 

Back again on this somewhat quiet but helpful page. My husband is now stopping chemo and im personally very happy with this.He I would say is a bit mixed as of course its a lot harder for him to accept that his disease is terminal.  The new plan is to do a bone marrow biopsy in 2 weeks and see if the bone marrow is empty of all of its stuff or whether the bone marrow has some disease if there is some disease then chemo hasnt worked but if there is nothing in the bone marrow chemo has had an effect and can consider less toxic treatments, currently after several blood transfusions his heamoglobin is 8 which is very low! Too low fr chemo. So the plan is for him to have hospital help in getting him eating and moving and getting his bloods up before he comes home. Very glad now that the chemo has stopped as it was doing him in completely and he is having kidney trouble. So very pleased that he will be coming home and can be looked after at home. Hopefully he will be home in roughly a weeks time when the care package is finalised. So would be interested to know if anybody had had any help with t cell lymphoma management specifically with any immunotherapy drugs.

Hi again and first a ((hug))

So a plan is in place and with a plan you can move forward understanding that the best choice has been made and with this brings a measure of peace.

Make sure the hospital have assessed him for any and all care that is available at home as you may need help and support.

I have no experience with immunotherapy drugs but let’s see if anyone else picks up your posts - you could also post in the general NHL Forum.

We do have other forums where you can connect with others supporting family and friends in our Supporting someone with incurable cancer Forum - so worth having a look.

But we are here to help as best as we can ((hugs)) again.

Hi as Mike has been giving good support and advice the was little I could add, with regard to none chemo treatments for your husbands type of T cell Lymphoma the are 2 drugs being trialed in other countries and they are 

• romidepsin
• belinostat

romidepsin is being trialed here in the UK for a different type of blood cancer so may be worth discussing are these drugs an option, you may get an initial response to say no but push to ask if they either can be sourced on compassionate grounds, it has worked for others and as this is a rare blood cancer they may be willing to give something left field a go.

The other treatment that may have some impact is steroids but for how long and at what cost as they are not without some risks and side effects especially long term.

here is a link to the T cell foundation it may be of help, it run by top consultants in the US

https://www.tcllfoundation.org

hope this helps

John