Patient Stories

What patients are saying…

At the time of surgery no one thinks about the tumor specimens, but they are very important because they can be sent to various labs for analysis to determine the best chemotherapy treatments for them as well as having samples available for ongoing immunotherapy trials or ones that may become available at a later date.

I highly recommend the use of StoreMyTumor to every patient!

– Pam Duffy

I preserved my tumor for a specific clinical trial, but as I was waiting for it, I was disqualified. I was devastated at first, but thankfully learned that the same treatment was available in Germany.

My son made sure I had sight-seeing adventures every day after my treatment was finished. We had a great time!! Thanks for making this happen!!

– Carrie Gillotte

When I was diagnosed, I was overwhelmed and left the important details to my Dr., but he didn’t tell me about tumor preservation.

Now, facing a second surgery, I want to make sure to harvest tissue for more current immunotherapy treatments.

Every woman should be given this choice because there are no do-overs

– Judy McCann

Janet Richards

All the exciting research I found for ovarian cancer treatments focuses on vaccine trials treatments (a type of personalized immunotherapy), which, in most cases, require fresh tissue.

If a patient is lucky to travel and do the surgery at the academic center conducting the clinical trial, they might store the tissue for the patient and for the particular trial, but they also generally own all the tissue whether it is used by the patient or not.

Store My Tumor gives patients options to have the surgery performed in a location different from the vaccine trial location; to store one’s tumor at the time of the original debulking in case it might be needed for future trials; and to have control over unused tissue that can be saved for future treatments after the vaccine trial.

In my own case, Store My Tumor was not an available option at the time of my initial debulking surgery in 2002 or at the time of my operation for my first recurrence in 2008. Only paraffin slides were saved from those surgeries, which is the protocol at most hospitals. When I recurred again in 2010, I was told by docs at Sloan Kettering and MD Anderson that the spots on my liver were inoperable. In 2013, I found Dr. Javier Magrina at the Mayo Clinic in Phoenix who agreed to operate. For several years I had wanted to get into the vaccine trials at UPenn but did not have the live tissue required. I immediately phoned UPenn to see if they would accept the tissue from the Mayo surgery. They agreed on the condition that the tumor was properly processed and transported. UPenn had worked previously with Store My Tumor and approved of my using their services.

“The collection was a simple procedure from my standpoint” Dr. Magrina said; Store My Tumor delivered a box to my hotel the day before the surgery; I took it with me to the hospital on the morning of the surgery; medical personnel gave the box back to my son following surgery; he dropped it off at FedEx. Done!

After I recovered from surgery, I contacted UPenn and began the process of testing to determine my eligibility for the trial. Only when I was admitted to the trial did I tell Store My Tumor to release my tissue to UPenn. I released only the amount required for the vaccine trial. The rest of my tissue is still stored at Store My Tumor in case I need it for future treatments or diagnostics.

I believe access to one’s own tissue will give ovarian (and all patients) many more personalized treatment options for assay testing, targeted therapies, and vaccine trials. I am so glad to have had the option to receive surgery in Phoenix (next to my home), participate in the vaccine trial at UPenn, and still have more tissue stored that I can access for future treatment if needed.

Disclaimer: patients’ original names and photos above were replaced to protect patients’ privacy.

In the 5 days I had between diagnosis and surgery, I read everything I could about my cancer, prognosis, treatment, and current research. What I did not read about was the importance of storing specimens of my tumor “alive” versus “dead” (fixed in paraffin). At the time of my surgery, I wasn’t thinking about what they were going to do with my tumor when they removed it, and my doctors didn’t tell me that I might need it. I wish I had known how valuable it would be. Now it is 4 years later, I am experiencing my third recurrence of cancer, and I feel like I have limited my treatment choices.

– Jeanne

I am a 9 year cancer survivor of stage IIIC ovarian cancer. With very little time before my surgery, the StoreMyTumor team worked quickly and efficiently to send me the kit for my surgeon and all went well.

– Edna

I am so glad to have found StoreMyTumor. It allowed me to receive my prostate cancer surgery next to my family, in Phoenix, then later participate in a personalized vaccine treatment in Europe.

– John

Not just the tumor storage but the education I received from StoreMyTumor about cancer vaccines and clinical trials was worth every penny! I didn’t get that from my doctor. I feel so much better prepared to fight this. I am just not ready to leave my daughter.

– Marcia

StoreMyTumor was not an available option at the time of my initial surgery in 2006 or at the time of my operation for my first colorectal recurrence in 2008. Only paraffin slides were saved from those surgeries, which is the protocol at most hospitals. When I recurred for the 3rd time in 2011, I wanted to think beyond the standard of care

– Laurence

It was a simple procedure from my standpoint, and my patient navigator was wonderful and informative. The whole thing was easier than I expected.

– Pam

Disclaimer: patients’ original names and photos above were replaced to protect patients’ privacy

TRUE STORIES OF IMMUNOTHERAPY

After I received my first shot, I woke up the next day and it was like euphoria, like a new lease on life, because I knew the threat was removed. Now that I have had this vaccine, I feel like a survivor of the titanic, because I see many people in icy water and I don’t want to be the only one in a lifeboat

Diagnosed with breast cancer in 2010, Melissa Nicholas was treated with a personalized vaccine, with the intent of preventing a recurrence of her cancer.

– Melissa

After another two weeks there was a 50% shrinkage, and by Christmas there were no active tumors – just one lump with fluid. By April this year it looked like I was cured.

Diagnosed with melanoma in 2009, Hein Jambroers was treated with a combination of TILs (Tumor-infiltrating Lymphocytes) and immunotherapy drugs.

– Hein

On my fourth and final treatment, I was feeling great. It’s been 8 months and I’m totally disease-free. It’s so good to have my life back again.

Ray Merrill was diagnosed with melanoma in 2011. Standard of care treatments did not work, so he was treated with a dendritic cell vaccine specifically for his tumor.

– Ray

It was relatively easy. The side effects just aren’t there because it’s all made from your own body, so you’re not going to reject it … I’ve been in remission since. So I’m grateful, I really am…. I’m traveling a lot more. You start your bucket list so to speak and enjoy the little things too. The family, the marriages, the graduation, so it’s all good.

Diagnosed with ovarian cancer in 2007, Liz Thomasson was treated with personalized cancer vaccine to prevent future cancer, through a clinical trial.

– Liz

Unlike chemotherapy, this treatment had no side effects on me… Today, I feel good and above all, my latest tests have revealed no trace of my cancer.

Diagnosed with ovarian cancer stage 3 in 2009, Yi Zuo was treated with a personalized cancer vaccine to prevent recurrence, through a clinical trial.

– Yi

On my fourth and final treatment, I was feeling great. It’s been 8 months and I’m totally disease-free. It’s so good to have my life back again.

Ray Merrill was diagnosed with melanoma in 2011. Standard of care treatments did not work, so he was treated with a dendritic cell vaccine specifically for his tumor.

– Tj

EXPERIENCES WITH ADVANCED DIAGNOSTICS

Even though stage 4 metastatic cancer is not curable, it’s treatable and manageable. I still can do anything I want to do. And that’s part of my joy.

Diagnosed with breast cancer in 1992 with a recurrence in 2003, including multiple metastases, Sandy Fehrman was treated with therapies directed by molecular profiling of her specific tumor.

– Sandy

It was a huge surge in hope and positivity. One of the drugs worked 100% in the mice. So far the results are very encouraging. Some of the tumors have disappeared altogether. Some have stayed but are very small.

Diagnosed with sarcoma in 2010, Yaron was treated with a regimen determined by a mouse TumorGraft.

– Yaron

Chemo Sensitivity testing exposed my tumor to various drugs and observed which drugs actually killed my tumor cells. In my case, they identified a combination of drugs that worked in the laboratory that I immediately received. My ascites completely resolved within 3 weeks. Today, over 10 years later, I can confidently say that I am cured of recurrent metastatic ovarian cancer!

Diagnosed with ovarian cancer in 1999 with a life expectancy of weeks to months, Elizabeth Panke was treated with a very specific combination of drugs determined by chemosensitivity testing.

– Elizabeth

Patient Stories

Learn why you should store your tumor and what your options are.

Thank you!