Hi, my sister in hospital with Lymphoma T Cell.

Hi Nadine Andine and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your sister…… this is a difficult time for you being away from your sister.

I am Mike and I help out around our various Lymphoma groups. 

For some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

First, do you know the ‘exact type’ of T-cell lymphoma she has…… there are a number and knowing this information helps us support you better.

At times when communicating with medical professionals…… asking the correct question is the best way to get the information you need to better understand the condition and what the weeks, months and years look like…..

Some medical professionals see past the patient and family……. and focus on the ‘task’ at hand and miss the need to support the patient and family.

The link below lists the questions that should be used at various times of the Lymphoma journey…

Questions to ask your medical team about Lymphoma

In the UK.. cancer patients are assigned a Specialist Cancer Nurse (CNS) who are the patients and families point of contact with questions and concerns…. Is this an option in France?

CHOP is one of a number of very effective treatment regimes…… but these treatment do take time to do the job and improvements will take time……. and having blood transfusion and platelet infusions is unfortunately part of a normal treatment journey.

Always around to chat more and help out as best as I can ((hugs))

Hi Mike,

I am so grateful for your prompt answer, much appreciated.

your reply confirms my zone of confusion on this matter, if this makes sense!

as my brother in law and niece are ‘the next of kin/ people trusted for information I can only rely on their feedback to me.

I asked more details from them, like what type of T Cell lymphoma etc.. and unfortunately my brother in law has an attitude that ‘one should not ask too many questions to the consultant’ who is ‘ busy’ and he is grateful doctor does talk with him from time to time!! Needless to say I was personally feeling surprised and frustrated, they would have so little healthy interest about my sisters lymphoma and thought information helps with this journey.. 

mon fact I was told that it was slightly irritating that I was pushing back for what to new seems normal, so I have to go Ali g for now with what is available, but, but will revisit in a few days..

I lost my husband to melanoma cancer many years ago so I realise the importance of asking the right questions.

all I do know is that when I hit the call from my niece to say about the situation, it sounded as though my sister could pass away anytime..likely she is still with us, and but in a very poor condition, as she can hardly speak, and has a very confused state of mind.

i live in Guernsey, where the medical care is very good, and doctors very ‘family’ oriented, however my sister is in a big military ( !) hospital in Paris, that specialises in ‘hemathologie’.

apologies about my long text, I do need to talk, it was so chocking seeing her in that condition.

thank you for your kind help.

Nadine

Hi again Nadine…… and first sorry to hear about your husband…… and please do not apologise about the length of any post, this is what this group is for.

I can understand your frustration and in my experience of 25 years….. knowledge is power… one to help you understand the terms and why things are done and when…… but more importantly to recognise when consultants are winging it!!!!!….. yes they can do this rather….. than consult with experts who know T-Cell NHL.

My story is rather complicated (See my story) but at one point my team in Inverness put my case out to review to a number centres of excellence and specialist consultants across the UK and with their input a treatment plan was put together.

Obviously as T-Cell Lymphomas are all rare there are various levels of challenges with availability of treatments…. and having consultants who ‘actually’ have experience in specific types of T-Cell NHL is very very important.

It is important to understand that Lymphoma is very very different from other types of cancers….. this is exemplified in staging……. Staging in Lymphoma is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies…..

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation.

((hugs))

Hi Mike,

thank you for sharing your story, you went through so much! What a journey.

I like very much the Nelson Mandela, saying…

thank you too for the questions to ask information.

i am very grateful

warm regards

Nadine

Hello Nadine! A little late to the party, but I have a journey with T-Cell Lymphomas as well. There was an internationally known lymphoma research doctor in Lyon by the name of Bertrand Coiffier, but sadly he passed away in 2019. However, he wrote hundreds of published papers on lymphoma and was an expert in T-Cell Lymphomas. He must have a successor who can be consulted.

   I will tell you that CHOP has a marginal record against T-Cell Lymphomas, as it was designed decades ago to fight B-Cell Lymphomas. It is quite often used along with Etoposide in a regimen called CHOEP or EPOCH.  I have had two different T-Cell Lymphomas (PTCL-NOS and Angioimmunoblastic T-Cell Lymphoma) with relapses of each. I required 15 different drugs in several regimens to place me and keep me in remission, and I have now received 21 different drugs as well as a stem cell transplant. 

   Little was known about T-Cell Lymphomas, but in the past 15 years or so, there have been many advancements. I am in the States, and we bother our doctors here for information. The sub-type can be critical, as there are 27 or 28 sub-types known. I eventually had both simultaneously, (plus a third marrow cancer) but only one would react to a given treatment regimen. It was a bit of a battle.

   "IF" she has Anaplastic Large Cell Lymphoma, ALK+, then CHOP does a very good job. With all of the others, relapse is expected and I have had three relapses. You might advise your brother in law that now is the time to be nosy and ask lots of questions.   Hee is hoping that all is well with her!

Jim 

Hi Jim,

how are you? Hope all is well.

My sister say passed away 2 weeks ago!

I just come back from her funeral in Paris. It has all been so quick, 3 months.

I will try to read some Coiffier ‘s books in a way to understand more of what happened to her.

thank you again for exchanging with me

Nadine

Oh Nadine, that is so sad. May she rest in eternal peace. May you, all of her family and her loved ones receive consolation in your time of sorrow. Of all Lymphomas, T-Cell types have by far the poorest outcomes. I am certain that Dr. Coiffier's literature will provide much information, even of too late for your sister.

May peace be with you and your family.

Jim

Hi Nadine  Andine and I am ever so sorry to hear about your sister. My sincere and heartfelt condolences to you and your family.

Of all the Lymphoma types unfortunately T-Cells do tend to be the most unpredictable.

This is such a difficult time for you to navigate as you are dealing with a complicated set of emotions…but taking can help….

You may want to have a look at posting in our dedicated Bereaved Family and Friends Support Group.

Talking to people ‘face to face’ can be even more helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Sending ((hugs)) xx