Panniculitis like subcutaneous T-cell lymphoma with HLH

Hi again Evamaria and well done navigating across to this corner of the community.

T-Cell NHLs are rare and with this brings the challenges of how to treat them but CHOP is an effective treatment…… I had most of the drugs in CHOP back in late 2013 to early 2014 when I had my 6 cycles of R-EPOCH……. although this treatment was being used to open the door for me to go on and have an Allograft (donor) Stem Cell Transplant (See my story)…….. has this been mentioned in anyway?

As for support for you…… you need as much support as you can get.

As you see this group is rather slow but that is life with a rare Lymphoma.

You could join and post in the Community’s general Carers only support groups where you will connect with a wide range of members navigating the same support challenges.

As you are in the UK you I recommend that you check out Lymphoma Action…… 

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run various Support Platforms… I highly recommend these groups…… and you may bump into me as I also volunteer with Lymphoma Action ;)

As you check through the link above you will see a general FB support group with 5800 members with about a third being Caregivers…… this is a good starting point.

You will also see a monthly Zoom support group specifically for Caregivers and family.

They also have a great Buddy Service where you can be linked up with someone who has walked the same support journry who you can talk with on a regular basis.

The Lymphoma Action helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

I am always around on here to help out as best as I can.

Thank you for all this Mike, I shall have a look at the various links you recommend.

no, a stem cell transplant has not yet been mentioned …. Though from what I read, it may well be coming to that.

I am already finding all this so helpful and hopeful, thank you again,

Evamaria

Hi Evamaria we are away out to our daughters for the afternoon so don’t have a good signal in the wilderness of the Highlands….. ;)

But for good reliable information stick to the Lymphoma Action website as it’s up to date and accurate……. don’t be tempted to randomly search through Google as it unfortunately will take you down dark rabbit trails.

You may have seen in my story that I had 2 Allograft SCTs…. It’s a long story.

Looking back….. our daughters were 14 and 18 when I was first diagnosed in 1999…….. but despite my many years treatments and challenges…… we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and I am now 9 years 8 months since my last treatment….. living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done…….

There is always hope even in the darkest times.

((hugs))

Hi Mike,

I used to live in Scotland for many years and travelled the highlands a lot … I miss it!

thank you for your encouraging words. They are so needed.

and yes dr. Google isn’t recommended.. 

looking at the lymphoma action site right now … 

 So sorry to hear this. The two conditions are indeed a challenge. Certainly no physician here, but it seems that his immune system must be suppressed - the upshot being that it cannot then fight the lymphoma. However, that places more importance on the selection of chemotherapy agents. They must control the lymphoma while the antibody suppresses an out of control immune system and its inflammatory response. 

Caregiver burnout is a sad fact. Please seek help as you can be of no help if you break down from overload. Do you have a world view, belief system or religion? If so, now is the time to dive into it. Asking others for help can be problematic. However, asking them for thoughts, best wishes and even prayers is usually met with a positive response.

Consider that being his advocate gives a new and additional purpose to your life. You are stronger than you know and it is at such times as this that you can call upon that strength. Professional advice will most certainly help you make the most of this unfortunate situation. 

Thank you,

yes the above are all happening and after six courses of chemo we are heading for a stem cell transplant. At the moment there is worry that the lymphoma has crossed the blood brain barrier and a lumber puncture is being carried out as I write …

In a way the diagnosis helped to calm things down but we learn fast that there is ALWAYS some new worry and keeping the continuity of throwbacks and anxiety under control is one off the biggest challenges. 
Since my partner was so ill at diagnosis, he has only fallen further … it’s very very tough for him and for myself watching …

I have initiated help for myself and am awaiting counselling and financial support… 

Remember that doctors are professional worriers. How can we separate their worry from our own? I have found that the vast majority of worries never come to pass. What I have suggested is for caregivers to maintain a list of worries in a notebook. As time passes, revisit the list strike out those worries and fears which did not materialise. In that manner, one takes some level of control over the worry and observes that worries are not reality. 

As a side note, a lumbar puncture was performed more than once in my case. As a prophylaxis, I was administered an injection of the drug Methotrexate into my spinal fluid on the off-chance that the lymphoma had crossed. Nothing ever came of that concern, so it is now long past - as is the case with all worries. Even if some of our fears are realised, we are adaptable and learn to cope. 

You will certainly gain more of these coping skills, as you have already demonst5ated them!  

I am hearing you. Sadly most of our worries and the doctor‘s worries have in the past months come true and often worse than feared. Hence it is very hard to feel easy about it at this time … 

we are learning to adapt ( has to be quick, as from Diagnosis to chemo was only 4 days) and it’s taking all out energy at the moment … 

Take heart that it was as quickly as four days - almost a record. At stage IV, it required two months and multiple misdiagnoses and an additional month for chemo to begin. 

Oh that diagnosis took three years of which two months of almost dead in hospital … we just didn’t expect cancer as he was just mysteriously ill and all scans were clear. First a diagnosis of HLH finally lead to biopsies that found the lymphoma … and then yes, quick response…