hi lovely people, been diagnosed with non hodgkin lymphoma and have decison to make treatment wise because of a heart issue i have....

Hi dave75 and a warm welcome to this corner of the Community although I am sorry to see you joining us.

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 - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well.

What exact type of a Lymphoma do you have?…… and what is the exact name of the chemo you are having?…….. I had various treatments but my main chemo was R-EPOCH.

The R-EPOCH was being used to open the door for me to go on and have an Allo (donor) Stem Cell Transplant ((SCT) as the chemo was only going to give me a small window of remission…….. so the drug that could develop a heart issue was not left out as I needed the full force of the treatment to allow me to progress to SCT

My heart issues actually did not start until a good 16 months after my main chemo and it kicked off the day I had finished the process for my second SCT……..yes my story is rather complicated so you can see my full story in this link -  See my story

thanks mike for replying, that is one hell of a journey you are on and you are  a truly inspiring individual,,,,,   i cant begin to comprehend what you have been through but thankyou for sharing your story with me!!

Ive got stage 3 high grade non hodgkin lymphoma and the treament is POLA ~R~ CHP treatment.....     

So my left bundle branch blockage means the full treatment will potentially damage my heart even more, 50% chance im told.

Hoping to find someone whos been in a similar situ and to see what they decided to do and what the outcome was.... 

Dave75

Not sure I have seen anyone post recently who has the same challenges but let’s see who is looking in.

You may also want to 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.and also a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.

The LA 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.

So sorry to hear of this dilemma. I have found during my journey that there are a series of choices to make. None of them carries a guarantee. Then, once you make a choice, it often eliminates another option. After that, once one has proceeded, they can never be certain that the choice made was the best. It is the uncertainty of life, but intensified. 

   I can advise no one medically, but relate only what my choices were. Early on, a stem cell transplant was offered me. Yet, no suitable donor was found. Therefore, I chose to go the research route and ultimately participated in four clinical trials, one of which was fabulously successful, but in the end, was not the final word on the matter. I was given the choice of palliative care or of more intensive therapy intended to achieve the almost mythical "cure". I chose the more aggressive path.  

Due to my case being rather complicated, we eventually exhausted all lymphoma drugs. At that point, the lymphoma appeared to have been eradicated, but a marrow cancer persisted. How much more therapy could my marrow and organs withstand? Another mystery. Due to the nature of T-Cell Lymphomas, it was a matter of when and not of if it would again relapse. As the immune system originates in the marrow, it was again decision time. Six years on, no donor match could be located. Ultimately my son was found to be a half-match (5/10) and I received his stem cells.

Transplant was a true bridge of sighs, as there is a known percentage, ranging up to 30%, who do not survive the process. Likewise, there was no turning back. However, I had by then undergone so much that it seemed reasonable to continue the fight. My old immune system was gone forever, as was my blood type; both having been changed out for that of my son, which is 50% my wife's DNA. Complications!

In any event, it boils down to whether or not we are willing to assume certain risks. Certainly a 75/25 chance of no further heart damage would make the choice far easier, but the risk must always be borne in mind. In your case, fatality does not seem to be the risk, but perhaps a substantial change in lifestyle. My mind tends to think that, unless stopped, the lymphoma is far more of a threat than the blockage. 

At times, there are no happy choices.