Joey Pouch

My brother Joey and I were featured on NBC 5 Chicago News on 12/28/10:

The fundraiser at Maya del Sol was a success. Thank you to everyone who came and to the people who made a donation! We were able to raise over $700 for Leukemia & Lymphoma Society (50% of the proceeds.)

It was great to catch up with old friends as well as meet new ones! Thanks again for your support to fight blood cancers. Please see pictures below from the event.

Please join Leukemia & Lymphoma Society and the Joey Pouch to raise money for blood cancers.

Place: Maya Del Sol (708) 358-9800
144 S Oak Park Avenue
Oak Park, Illinois

Date: Tuesday, April 26, 2011
Time: 6 pm – 8 pm
Cost: $25.00 in advance or $30.00 at the door
Includes your choice of two drinks:
House Margarita, Sangria, Beer, Wine or Soda

30% of the proceeds will benefit the Leukemia & Lymphoma Society

Number of Tickets

1 Ticket $25.00 2 Tickets $50.00 3 Tickets $75.00 4 Tickets $100.00

Or by check made to:

Michelle Salerno, 47 Oakton Drive, Lombard, Illinois 60148

There will be a “Pick an Item” Raffle. Prizes include Cubs Tickets, a $40 gift card to Egg Harbor Café, and more!

For additional details, please contact Michelle Salerno at (630) 310-4366.

Please confirm your attendance by April 15, 2011.

I am doing well on the clinical trial SGN-35. I believe I have three more treatments left since I started on May 4, 2010.

However, Who would have predicted that I would slip and fall on black ice while walking Bisou, my Bichon. Ouch! I fractured my right wrist and my left side of my pelvic bone. I appear to be a bit fragile. The good news is that I am healing and I should be my old self in no time.

If you would like, Please feel free to contact me using my contact form!

Happy Valentine’s Day!

The Gift that Keeps on Giving Loyola University Health System Cancer Patient Continues to Give After Receiving Life-Saving Bone Marrow Transplant from Brother

MAYWOOD, Ill. – It’s the season of giving. It’s the time of year when we pause to think of those we love and reach out to help someone we might not even know.

For Lombard, Ill., resident Michelle Salerno the perfect gift came early this year. On March 9, 2010, her brother Joey gave her 5 million of his own stem cells, a gift that has given Michelle hope, a chance to fulfill a lifelong dream and an opportunity to bring help and life to others.

“Growing up, Joey and I really weren’t that close,” said Michelle. “He was the oldest so he left for college when I was still young and he was in the military so distance made it difficult. When he found out I had cancer everything changed. He’s my best friend, whether he knows it or not.”

In 2002 Michelle Salerno’s life came to a screeching halt when she was diagnosed with Hodgkin’s lymphoma. The prognosis wasn’t good, but Michelle was ready to fight and so were the staff of the Loyola Cardinal Bernardin Cancer Center, led by her oncologist Dr. Tulio Rodriguez.

“Dr. Rodriguez would always tell me that I’m not dying any sooner than the rest of the people living. He never gave up on me. There was always a Plan B, something else to try,” said Michelle.

For Michelle Plan B was a series of stem cell transplants, rigorous chemotherapy and clinical trials. When a transplant of her own cells failed she was told she needed a donor.

“I will never forget the expression on Dr. Rodriguez’s face when he told me my oldest brother was a match. Joey was a 10 out of 10 match!” exclaimed Salerno. “Joey never even hesitated when he learned he could help. He was happy, relieved knowing there was something he could do.”

But the joy was short-lived. The first transplant in 2004 didn’t work. After 100 days of isolation and Michelle fighting with all her strength a CT scan revealed Joey’s cells worked with the cancer instead of against it.

“Michelle is a fighter. She is an exceptional person and wasn’t ready to give up. Neither was I. She would do her research and so would I. We’d bring our ideas and discuss different treatment options,” said Rodriguez.

Michelle underwent seven more years of chemotherapy, tried every known type of treatment for Hodgkin’s lymphoma, but her bone marrow still wasn’t working properly. She was coming to Loyola every two to three weeks to receive blood and platelet transfusions.

“I was exhausted and at times I didn’t even know what was going on, but I wouldn’t give up. When one treatment didn’t work we’d try something else. I knew I could always come back to Loyola and they would find something else. They give me hope. I know they’re fighting for me too,” said Michelle.

Dr. Rodriguez approached Michelle about being part of a trial for a new drug called Brentuximab Vedotin (SGN-35), a treatment for Hodgkin’s lymphoma patients who have relapsed. Before she could join the trial she needed a stem cell boost to repair her bone marrow. Michelle knew Joey would be there in an instant, but since he lived in Bethesda, Maryland, she didn’t want him to have the extra financial burden of purchasing an airline ticket.

The miracles continued. Southwest Airlines donated opened-ended tickets for Loyola to give to its cancer patients, helping them receive the support and care they need. Thanks to Southwest, Joey not only came for the transplant but was able to stay and offer emotional support. But the best news was that this time, the transplant worked.

“When we started this process I told Michelle that we didn’t know what the outcome could be. This was a new therapy and there was no guarantee that it would help, it could even make her condition worse, but she was ready to give it a try. By being a part of this trial she has kept the gift of life going. She has offered herself to help strangers who in the future will find out they have this disease, but now will have additional options for treatment thanks to Michelle,” said Rodriguez.

The combination of the effective transplant and the new treatment has exceeded expectations. Michelle is the healthiest she’s been in years, even fulfilling a life-long dream to go to France, which she did this past fall. She still comes to Loyola every three weeks to receive an infusion of the new drug, but her life has been transformed.

Michelle’s experience is not only benefiting the cancer patients of tomorrow, it’s helping those fighting today. After over two years of wearing a Hickman catheter she designed the Joey Pouch, named in honor of her brother.(www.joeypouch.com) It holds the tubes that dangle from a central venous catheter, making patients more comfortable. This soft pouch is given as a gift to Loyola cancer patients who can benefit from it.

“It’s amazing to see the change in Michelle. In 2003 she was so sick and suffered for so long and now she is able to enjoy life,” said Rodriguez. “It’s not just about fighting a disease; it’s about making sure someone has a good quality of life.”

“I can’t say ‘thank you’ enough. To Loyola, to Southwest, and especially to my brother. You have truly saved my life,” said Michelle.

For media inquires, please contact Evie Polsley at epolsley@lumc.edu or call (708) 216-5313 or (708) 417-5100.

Recently I had a CT/PET scan and met with Dr. Rodriguez this past Tuesday. My mom and I listened to him as he explained the results.

The PET scan identifies “hot” spots and a number is given to each spot. A “hot” spot does not always mean cancer, instead it could detect an infection. A physician will always compare the last PET scan to the most recent of his patient to get the best results.

I have two “hot” spots, one on my rib and one on my spine. Normal range is from 1 – 3 and my numbers were about 3.3. My last PET scan indicated that my spine was a 14 and now a 3.3. Great news! Don’t you agree?

The cancer nodules in my lungs, spleen and liver have all disappeared. It takes a little longer to fight cancer in the bones. I have 6 more treatments of SGN-35 and by the next test, I should be NED (No evidence of disease).

I don’t need to hear NED now because I know that I am doing well. I have energy, I am eating well and often, I am working on my project – the Joey Pouch and I am looking forward to Christmas.

Thank you for your continuous support, friendship and prayers.

Please spread the word about the Joey Pouch.

Hugs,
Michelle

So how many of you started a treatment and were perfectly fine after your first dose? Second? Third? It became a routine for me when I started the Clinical Trial for SGN-35. Once every three weeks I would drive myself to LUMC, get my blood drawn, be examined by Dr. Rodriguez , receive SGN-35 medicine in the Day hospital and an hour later I would drive myself home. Sounds pretty simple, right?

The ninth time was different. My routine changed at the point I met with Dr. Rodriguez. The main side effect for SGN-35 is neuropathy. I expressed to him that my feet and hands have been cramping up from time to time. To rule out some of the underlining causes, he ordered potassium along side my treatment.

After I received the medicine that was ordered (SGN-35 and potassium), I stopped by the front desk to purchase my parking token. By the time I arrived, I was slurring my words, couldn’t walk straight, was light-headed, giggling at everything and I basically appeared to be drunk. Yes, drunk!

Mike was working at the front desk and he knew me pretty well from being a patient at Loyola. I wasn’t acting like my usual self. He noticed and nicely told me that I couldn’t drive home, not until I started acting like the person he knew. If I disagreed with him, he was going to take my car keys away from me. He told me to please sit down in the lobby for about 15 minutes or I had to give him my keys.

I decided to go and find Dr. Rodriguez so he could explain to me why I had an adverse reaction…he had already left for the night. However; everything worked out in the end. I saw my nurse who started an IV and flushed fluids through my body. She paged Dr. Rodriguez to make him aware of my condition and he said I could go home as long as someone drove me. So I ended up having a fellow cancer patient drive my car home. She called her brother to pick her up at a nearby restaurant.

So what would have happened if Mike didn’t stop me??? Would I have been in a car accident??? I am telling you that I probably would have been in one. I was not in the right condition to drive. So I just wanted to thank him personally and let everyone know what a great guy he is for noticing my “unusual” self!

I am honoring a young man named Nate Lindstrand (age 22) who lost his life to Hodgkin’s disease this past Friday. I was paired up with Nate through Imerman Angels.

Information from Imerman Angel’s (IA) website: IA carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Cancer caregivers (spouses, parents, children and other family and friends of fighters) also receive 1-on-1 connections with other caregivers and survivors. These 1-on-1 relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience. The service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage level, at any age, living anywhere in the world.

Nate was diagnosed about two years ago while serving our country in the Armed Forces. It was then that he found a very large lump on his neck. After his Hodgkin’s diagnosis, he went back to Portland, Oregon to be with his mother, Kim, his caregiver.

Kim and Nate found me through IA. The first time I spoke to Kim, I told her everything that I knew from my own experiences dealing with and fighting Hodgkin’s Disease. Our conversation lasted over two hours. I could tell that she loved her son very much and would do anything she could do to save him.

We exchanged information as time went on and at one point I told her that I had been communicating with Nate. She was somewhat surprised because he was normally a shy man. He didn’t tell her that he reached out to me. He was a very sweet person.

In the e-mail that informed me of his passing, Kim mentioned that in lieu of flowers, the family suggests the following; just hug someone you love, and enjoy the time you have together.

So please take her advice, it is something we all can do in memory of Nate this Thanksgiving.

Thank you for this wonder gift SouthWest Airlines!

To all the Breast Cancer survivors:  The pouch can be used for a post-operative drain after having surgery from breast cancer.  The pouch can be used for many functions and the two most important ones are Post-op drains and Hickman catheters.

Please contact me if you or someone you know needs a Joey Pouch!