Potential Breakthroughs Lie Ahead for Mantle Cell Lymphoma Patients
by Mackenzie Gignac
Mantle Cell Lymphoma (MCL) is one of the more uncommon types of blood cancers and accounts only for 5-10% of all types of Non-Hodgkin Lymphomas. MCL is an incurable type of Lymphoma. However, it differs from other types of incurable Lymphomas as it grows relatively quickly. Most other fast-growing (dangerous) Lymphomas are curable. On the other hand, slow-growing Lymphomas are incurable but not dangerous. Unfortunately, MCL generally is both incurable and dangerous. However, hope may be on the horizon for patients that are suffering from MCL.
Chris Kavadas has experienced two types of MCL treatment, standard chemotherapy + Stem Cell (bone marrow) transplant and the potential new MCL treatment, oral “targeted therapy” tablets. The first signs of his MCL were discovered in 2012 when Chris was 47 years old.
Chris said he first noticed something was off when he was experiencing teary eyes constantly. As a tradesman, Chris initially brushed it off to his profession. Finally, after 8 months and no relief, Chris scheduled an appointment with an ophthalmologist who immediately noticed an irregularity on the inside of his eyelid. This led her to order a biopsy which revealed that Chris had MCL.
The same day Chris’s ophthalmologist booked him to see a haematologist. The realisation of a cancer diagnosis hit him all at once, ‘I was sort of unaware of what she was talking about, but basically life changed when she said I would have to do chemo sessions,’ recalls Chris.
Chris’s haematologist at the time decided to put him on the strongest dose of conventional chemotherapy available, Hyper-CVAD. Because MCL is an incurable and deadly blood cancer this option is considered the standard of care in patients who are deemed fit enough to withstand it.
Although Chris handled the initial chemotherapy well eventually it started to take a toll when it got to the second half of the treatment with the bone marrow stem cell transplant. ‘I was strong enough for the standard chemotherapy and I did take it, but when I had the stem cell transplant that was a little bit different. That changed things,’ said Chris.
After the first round of chemotherapy, Chris had to have his stem cells extracted through an apheresis machine. This process involves needle injections in the stomach to stimulate release of stem cells from the bone marrow, which are then collected by “washing” the blood through a machine.
The first half of chemo wore Chris’s body down and weakened his immune system, it left him to deal with pretty intense side effects after his stem cell transfusion. ‘For a few weeks I had nausea, high fevers and hallucinations. I also had a tingling in my legs and a little bit in my hands due to the chemo I was taking,’ said Chris.
The effects from the second round of chemo were stronger because Chris’s immune system had to be wiped out in order to put the new stem cells into his body. His immune system was so weak that he had to be isolated from other patients in the chemotherapy ward. ‘I was put into a special room where the doctors and my family was coming in with full hazmat suits with gloves and masks. That was probably the most difficult time for me.’
There was a certain point for Chris that rattled him more than any other time in the treatment process. ‘That second round at Peter Mac was very much different in that the strength of the chemo stripped the lining of my esophagus. At one point I went to drink a glass of water and I vomited blood.’
Although the Hyper-CVAD treatment was long and tough in the end it was success in sending Chris’s CML into remission.
Chris continued to stay in remission until 2015 when he started to notice his body to flare up again. This time there was an issue with his colon. He urged his doctor to organise a colonoscopy which showed that his Lymphoma had returned.
Since his body had already undergone the most intense chemotherapy regimen possible, his haematologist said there was nothing more that could be done. Coincidently, his doctor knew of a clinical trial that was available for patients that had a recurrence of their Mantle Cell Lymphoma.
It was then when Chris met Professor and Disease Group Lead at Peter Mac Constantine Tam and was put on the AIM study. The AIM study was designed and conducted by Prof Tam. Instead of intense chemotherapy, this study combined two highly effective oral targeted drugs called Ibrutinib and Venetoclax.
These drugs also led Chris to deal with some side effects. ‘I was fairly nauseous and had thin blood. Any sort of scratch would make me bleed easily.’
The side effects were a small price to pay for the result that Chris had with this new treatment. ‘I was absolutely blown away,’ said Chris. After two months of starting the drugs Chris went in for another Colonoscopy which showed no signs of Lymphoma. ‘I could not believe the effect those pills had on my tumors, it was unbelievable.’
Prof Tam said that after four months of the oral tablets Chris was in such a deep remission that their most sensitive test which is capable of finding one cancer cell in 100,000 normal cells even came back negative.
Chris’s cancer continued to stay in remission, and after a year and a half of taking the oral drugs he was able to stop oral treatment as Prof Tam and his team could not find any cancer cells in his body. More than 2.5 years after stopping all treatment, Chris remains free of cancer even on the most sensitive tests.
This sort of result helped to get the AIM study published in the New England Journal of Medicine in 2018. Additionally, Prof Tam’s team was able to discover a groundbreaking finding that got published in Nature Medicine. This finding revealed a new way in which cancer resists chemotherapy.
Prof Tam said through this they were able to discover how to overcome resistance in the few patients who didn’t respond to the study, which led to the Australian Government to fund the follow-up study, AIM2. At the moment is currently being designed by Prof Tam.
It is due to patients like Chris who are brave enough to enroll in clinical trials that doctors like Prof Tam are able to make advancements in medicine. ‘When I was taking Con’s drugs all I could think about was how these drugs are going to affect so many people,’ said Chris.
Chris suggests to others that clinical trials should definitely be considered for those who might be at the end of the road with other treatments. ‘My sincerest advice is to enroll in a clinical program such as Con’s,’ said Chris. ‘I would not be alive today if it wasn’t for Con and the clinical trial.’