Marc’s Story

Site created on January 8, 2011

Thank you for visiting Marc's page.  All the warm wishes and thoughts have been wonderful.  We would love to talk to everyone individually, but we are just not able to at this point, so we set up this site to keep all our friends and family updated on Marc's condition. Please click on "Read My Story" for more information on Anaplastic Large Cell Lymphoma, and Marc's particular case and treatment.  

We will update the Journal below as we find out more about what's going on day to day.

Thank you all again,
Marc and Nicole

 

Overview: 

Simply put, lymphoma is a malignancy of the lymph system.  Anaplastic large cell lymphoma (ALCL) is a rare form of non-Hodgkin’s lymphoma, comprising only 2% of all adult non-Hodgkin’s lymphoma.  It is predominately an activated CD4+ T cell tumor and interestingly, is most common in children and young adults (30-40% of all pediatric large cell lymphoma).  So all of us who thought that Marc is just a kid at heart now have more proof.

There are 3 basic subtypes of ALCL, primary cutaneous (C-ALCL), and 2 more defined by presence (+) or absence (-) of anaplastic lymphoma kinase (ALK) on 2p23 (this is a gene on chromosome 2).  The biopsy of Marc’s lymph tissue showed presence of anti-ALK antibodies which means he has the ALK+ type of ALCL. 

Presentation/Diagnosis:

In Marc’s case, the ALCL presented as pneumonia that just did not seem to go away.  When it got so bad he was admitted to Northwestern Hospital, they did a CT scan and saw the swollen lymphnodes surrounding his lungs and pressing on his diaphragm.  This was one of the causes of his coughing and shortness of breath.  They biopsied the lymph tissue and was able to determine the diagnosis of ALCL. 

Prognosis and Treatment:

ALCL is a very aggressive form of cancer, however in the case of lymphoma this is a good thing.  It means it is very responsive to chemotherapy.  It is one of a very few amount of cancers where people will use the word cure, rather than remission.  When this second round of treatment is done, and successfully has an allo stem cell transplant, we are hoping the lymphoma will be cured! 

1st Round Chemo: This particular type of lymphoma was originally recognized 25 years ago (Stein H, 1985), and very soon after the CHOP regime of chemotherapy was developed.  CHOP -E stands for the 5 drugs that are given, Cyxlophosphamide (Cytoxin), Hydoxydaunorubicin (doxorubin), Oncovin (vincristine), Etoposide and Prednisolone.  Since its development, 1 medication was added to the regime, a biologic drug called Rituximab (Rituxan).  (A biologic drug is one that is developed for a singular biological purpose in the body.  In the case of Rituxan was developed to recognize a particular protein on the surface of the B-cell lymphocytes and kill them.  This is good because ALK+ ALCL is a B-cell lymphoma). 

Timing: All the drugs have different functions and will cause different side effects.  Marc will be given this cocktail of medication once every 3 weeks (21-days) for probably 8 cycles (24 weeks total), with the exception of prednisolone, a steroid he can take at home which will keep the inflammation down and thus help him breath more easily. 

2nd Round of Chemo:  Marc is on a new drug called SGN35 which has just come on the market of January of 2011.  He will complete about 5-6 treaments.  He receives treatment every 3 weeks.  The drip only lasts 30 minutes.  The main sypmtoms of this drug is fatigue.  

Autologous Stem Cell Transplantation (ASCT):  Marc completed an auto stem cell transplant May 24, 2011.  December 23rd, 2011 is was discovered he had a relapse.  He is now waiting to ensure his disease is in remission to he can have a donor stem cell transplant 

Allogeneic Stem Cell Trasnplantation:  We are waiitng for a donor, so we can successfully have an allo transplant for our last chance at our cure!

Side Effects: We all know about the side effects of chemotherapy, nausea, anemia, fatigue and hair loss (something all Chibnik men deal with from a very early age, so this is nothing new  ;) ).  That being said, the biggest concern is that of a depressed immune system.  This will leave Marc open to infections, so it is VERY important that he limits contact with germs and the outside world, both while he is in the hospital and when he is home.  

Newest Update

Journal entry by Nicole Chibnik

Happy 50th Birthday Marc!

Marc has turned 50 years old today!  He doesn't look a day over 40 - I know everyone would agree with me...

Today is a really special day, not only did Marc turn 50, but this is the actual day we were married in the town hall in Montalcino, Italy.  This was a mandatory service given by the "mayor" of the town - and it was quite a beautiful service.  After the town hall service, Rabbi Barbara married us on the 21st of July at the Castello Di Velona with all of our family and friends.  We technically have 2 anniversary days!!!!  Marc and I both wish we could all go back and celebrate again with all of our family and friends.  It was such an incredible weekend of wedding festivities that neither of us will every forget, it still feels like yesterday. I want to say that I married my soul mate, he is the most incredible husband, father and best friend.  I feel like the luckiest woman on earth.  Your family loves you Marc so much!

We have not posted in a really long time.  Marc's children Alex and Anni were here from Finland and we had action packed filled days.  We somehow managed to fit in all younger and older kids activities in almost everyday.  Lily and Jack had such a great time, I am surprised they did not slip in their suitcases and go back to Finland with them.  Marc and I also had such a wonderful visit with them, they helped us tremendously with a donor drive that was held at the Greater Chicagoland Jewish Music Festival.  They are the best swabbers - I told Alex I may have to fly him back so he can help us out!!!  I think Marc and Anni have earned the world record for watching the most movies in the movie theater in a week!!!  Anni is off to Spain and Alex is getting ready to move to his first apartment in Helsinki!  Pretty exciting...

Lily and Jack have been enjoying Adam's Park and the beach this summer.  Lily is maturing in the the most precious little girl ever.  Jack just loves to scream since he has not started using too many words.  They are screams of joy, however, we could use some ear plugs!  He is so darling and has a personality like his Daddy!

Marc has been receiving treatment every 3 weeks.  His counts have been quite low when we are scheduled for the 3 week appointment, so Dr. Rosen has changed his treatment to every 4 weeks because that is what his body can handle.  Marc was supposed to receive treatment yesterday, but his WBC too low to get it.  They sent us home with Neupogen shots instead!  We are still aggressively searching for a donor for Marc.  Alex, his son & Anni, his daughter were tested while they were here in town.  It the doctors choose to do a 50% Haplo match, I know Marc would like his son to be his donor.  Young males are usually the preference for being chosen as donors.  Marc's parents will also have further testing within the next week. We have not given up and are positive that donor is out there!!!!  

Marc and I are planning to execute a new concept called a "Flash Swab" at Northwestern in Evanston.  We think it is more efficient if we swab a group of 1000-2000 people all at once instead of sitting at a donor drive booth for hours.  We are currently working with BeTheMatch, Dr. Rosen & Northwestern, Imerman's Angels, Cesson and Scout from Design Scout to help us pull this off.  Our goal is to get into the Guinness Book of World Records and also get a lot of media attention to help spread awareness of being a bone marrow donor. Now, that our summer break is half way over, and we have enjoyed our break tremendously, we are back at it.  Our goal is to find Marc his match!  

We hope everyone is enjoying the summer!  It has been quite some time since we have seen our friends and family, but we are getting back to our normal routine!  Our friend Carol is convinced we have moved out of town...  We are still here Carol, I promise!!!!

We love all of you & thank you for all of your support!

The Chibnik's


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