Having been diagnosed with CLL back in February 2002 (age 50) I was successfully treated with FCR from August 2009 to February 2010 and remain MRD negative as at present.
Breast cancer followed in April 2016, then bowel cancer in September 2018. A five year surveillance period followed the bowel cancer surgery ending with a CT scan in September 2023. The CT scan showed two new problems. A thickened endometrium (possibly due to taking Tamoxifen since April 16) and ‘numerous indeterminate nodules in both lungs’. I had thoracic surgery early December 2023 to take biopsies of a couple of lung nodules. I received a diagnosis of the above mentioned rare cancer (known as EHE for short) in January. My pathology results were discussed in the Sarcoma MDT and the recommendation was for surveillance in respect of which I’m currently awaiting a further scan.
I would be interested to know if anyone on this forum has received a diagnosis of this extremely rare cancer. Thank you.
Written by
alipali
To view profiles and participate in discussions please or .
Unfortunately, I don't know much about Epithelial Haemangiendothelioma, apart from what I found online. But I know that CLL patients have a higher incidence of secondary cancers.
I recently saw an interview (on onclive.com) that discussed secondary cancers for CLL patients who had been thru FCR. Of course, I can't find it now. I recall the oncologist referring to genetic markers as playing a role in secondary cancers, and this is the reason chemo protocols are no longer recommended for 17p, 11q, or unmutated CLL patients.
I managed to find this study, “...study demonstrates that CLL patients after frontline FCR based therapy have 2.38 times higher risk of second cancers than in the general population. Particularly, the incidence of AML and MDS was significantly higher after FCR based therapy with a crude rate of 5.1% during the follow up period of 4.4 years (95% CI, 3.7 to 5.0). We did not find a significantly higher rate of non-hematologic cancers.” ncbi.nlm.nih.gov/pmc/articl...
Your reply here actually provided me with a great deal of relevant information. Not good news, but important to know this background. My husband was treated with 6 cycles of FCR nearly ten years ago, and was recently diagnosed with MDS. We are moving forward with a referral for stem cell transplant, pending remission after 3 cycles of vidaza and passing all the pre-transplant tests, and our team finding a suitable donor. It's a lot. My husband is always positive and determined, and if he can show that much courage after all he's been through, I figure I can too.
I am very sorry to hear of your extensive experience with cancers. I sincerely hope your condition remains stable.
My husband was diagnosed with CLL in March of 2013 (age 63). He endured six cycles of FCR from November 2013-April 2014 and achieved "full remission with incomplete recovery of the bone marrow." This last November (9 1/2 years after treatment) he was experiencing shortness of breath on exertion and tests showed he has MDS. He has been treated with three cycles of vidaza. We were referred to the Mayo Clinic for a stem cell transplant.
We are currently awaiting results of a new bone marrow biopsy to see if he is in remission and ready to proceed on the path to transplant.
So while we have not had the same diagnosis, we are certainly experiencing the harsh reality of secondary cancer after FCR.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Anyone Else Have This Problem?
Anyone else get this?
Anyone diagnosed in their 30's? 
Going on Gazyva - anyone else?
SLL, nodules and secondary cancers
