Deathly sick with Hodgkins Lymphoma and facing the 5th recurrence of the disease, Diane Paradise pushed doctors to help her. Educated about her options and her own body, she opted to participate in a clinical trial with cord blood instead of pursuing the usual bone marrow transplant and extended chemotherapy. This was a choice she does not regret. Diane is living proof that #WeCanICan: Beat Cancer with Cord Blood (in association with World Cancer Day).
WHAT TYPE OF HODGKIN LYMPHOMA DID DIANE HAVE?
About Nodular lymphocyte predominant Hodgkin disease (NLPHD):
-Nodular lymphocyte predominant Hodgkin disease (NLPHD) is a rare form of Hodgkins Lymphoma which typically accounts for only 5% of Hodgkins Disease cases.
-Doctors sometimes refer to these particular cancer cells as “popcorn cells” because of their unique shape similar to popcorn. NLPHD can occur at any age.
-Typically, this form of Hodgkins Lymphoma occurs more frequently in men than women.
Diane never stopped working during this time. She was determined to not slow down and it seemed the treatments were a success. She went into remission for 6 years.
Then, in 2001, during an annual check-up, her doctors gave her bad news. The cancer was back and this time the doctors said it was worse. They told her it was incurable. She was advised that they could try a bone marrow transplant but that she would also need 10 months of chemotherapy.
Diane refused to give up. She had learned a lot about Hodgkins Lymphoma by this point. She also knew how her body reacted to the chemo and radiation. She was leery of how well she could handle the chemotherapy. She sought out alternatives to the recommended bone marrow transplant and chemotherapy. Her search led her to Arizona where she entered a clinic to undergo a naturopathic treatment protocol.
This alternative treatment was successful at keeping the cancer at bay for several years. However, in 2005, she regrettably found herself sick again. She promptly underwent Rituxin therapy and appeared to be getting better.
Time passed and Diane began to rebuild her life. Yet, in 2008, the cancer raised its ugly head again for a 4th time. With the guidance of her conventional oncologist, Diane continued with her alternative treatment of diet, supplements and high dose vitamin C for two years under the watchful eye of her oncologist. She was a model patient and again she managed to keep it under control during this watch and wait period.
Suddenly it shifted and during round 4, she learned it had metastasized into her bone marrow. She was wheelchair bound and underwent another round of chemotherapy and Rituxin until early 2011. She went into remission again according to her oncologist. Relieved, she started to return to life “as normal” and moved back to the East coast to be with her husband who had been transferred earlier that year.
In 2012, she saw her doctors for a check-up and they told her the cancer was back for a 5th time. She immediately began a regimen of Rituxin again combined with Bendamustine. When these treatments showed no signs working effectively, the doctor informed her that there were no other options. She did not recommend a bone marrow transplant because she did not think Diane would survive it.
Frustrated, Diane decided it was time to find a new doctor. One who wasn’t quite as willing to give up. She started with a local cancer center where they were not only willing to continue treating her, but also recommended she search out some larger cancer hospitals who specialized in research. Her doctor at the cancer center wanted her to explore all possible options.
Diane researched everywhere. One of her doctors recommended she speak with the specialists at Johns Hopkins University.
She made an appointment and the doctors initially suggested a half match bone marrow transplant. However, Johns Hopkins was also involved in a clinical trial that compared the side effects of half match transplants to that of cord blood transplants.
Diane was intrigued.
ABOUT THIS CLINICAL TRIAL AT JOHNS HOPKINS
Note: This clinical trial is still on-going.
Purpose: Hematopoietic cell transplants (HCT) are one treatment option for people with leukemia or lymphoma. Family members, unrelated donors or banked umbilical cord blood units with similar tissue type can be used for HCT.
This study will compare the effectiveness of two new types of bone marrow transplants in people with leukemia or lymphoma: one that uses bone marrow donated from family members with only partially matched bone marrow; and, one that uses two partially matched cord blood units.
This clinical trial is still recruiting participants.
Study Start Date: June 2012
Estimated Study Completion Date: June 2019
Estimated Primary Completion Date: June 2018 (Final data collection date for primary outcome measure)
(Source: https://clinicaltrials.gov/ct2/show/NCT01597778?term=Ephraim+Fuchs&rank=4 )
She drilled her doctors with a hundred questions on the clinical trial. Her main doctor, Dr. Ephraim Fuchs, Professor of Oncology and Immunology, was extremely patient with her questions and appreciated having such a knowledgeable patient.
He even answered long emails in the middle of the night as Diane debated what to do.
Diane remembers. . .
“After much consideration and research, I decided to become part of the clinical trial. It was a random selection that determined I would get the cord blood transplant as opposed to a bone marrow transplant from a half-matched sibling.”
Diane was told she would receive the cord blood transplant on December 3rd, 2013.
The procedure would require 5 days of chemotherapy and a round of total body radiation to cleanse her body of her own stem cells. Then, she would receive a double cord blood transplant where doctors hoped the stem cells from each cord would compete against each other leaving the strongest and best to graft.
Transplant day arrived.
Diane was ready and did not know what to expect. She was pleasantly surprised how simple the procedure was. A cord blood transplant is more like a blood transfusion than a typical organ transplant.
(Watch this video to see a cord blood transplant and the process involved.)
Still, time is of the essence as the cord blood is thawed and prepared by the lab then transported to the doctors who actually perform the transplant. The actual transplant itself only takes about 20-30 minutes.
Diane was kept under observation for two days. Her family and friends helped with the recovery process which was more difficult than expected.
The effects of the chemo and radiation hit her about a week after the transplant and she began to suffer from severe dehydration, diarrhoea, infection, etc.
It was a bit of a rollercoaster as there was hope she was doing better one moment but she soon developed another issue. She would become concerned when her counts dropped.
However, on December 30th, 2013, doctors told her the good news.
The stem cells had completely grafted 100%, meaning that she was now essentially “cancer-free.” Diane was thrilled!
She was ready to go home, day 59 post-transplant, when the physician assistant pulled her aside and said her latest routine test results suggested a different problem. She had fungal pneumonia.
This was a highly critical situation for someone in her state. They insisted that she remain at the hospital for treatment another 14 days. She did and luckily the fungal medication worked as expected. Finally, she could go home.
Diane began to feel stronger. Her weight increased. Her energy started to come back.
Finally, after 19 years of struggle and endless treatments, she was cancer-free. Her follow-up tests since the transplant have confirmed her good state of health.
Diane feels that she has finally turned the corner on cancer.
She describes receiving a cord blood transplant as getting a new lease on life. So invigorated by the results, she has even taken up new sports like river kayaking!
“With cord blood, you get a clean slate. All those lessons you learned about being healthy on this journey with cancer can now be applied to your clean slate,” says Diane.
Since her transplant, Diane has continued to rebuild her body using all of the knowledge that she has acquired throughout the years on maintaining a healthy lifestyle and reducing cancer risks.
She has also continued with her career in new and interesting ways, namely the 365 Day Lifestyle project. Drawing on her experience and natural rebellious attitude (which has taken her far), Diane is using the 365 Day Lifestyle project to help others get the support and resources they need in overcoming life’s most difficult challenges.
It goes without saying that we should all be grateful to people like Diane who have opted to participate in clinical trials for cord blood.
Even if cord blood transplants have become much more common, researchers still have a lot of unanswered questions. The clinical trial in which she participated not only benefitted her but will bring insight to researchers and doctors everywhere.
When you ask Diane about her final thoughts on the experience, she is very clear. . .
“My biggest piece of advice is to know the cancer you have and the treatment options available. Don’t be afraid to ask questions until you are completely satisfied with the answers. The more you know, the better advocate you can be for yourself.”
As you can imagine, Diane is also greatly saddened by the fact that the majority of hospitals treat cord blood as medical waste when it could potentially save lives.
She feels obligated to tell expectant moms everywhere how important it is to save cord blood which is one of the reasons she has shared her story with Save the Cord Foundation.
She is eternally grateful to the families who donated the cord blood units that ultimately helped her.