Let me start briefly to how I ended up on this trial.
I already had 2 bone marrow transplants (1 auto, 1 allo; cells from my little brother)…had every chemo(ABVD, ICE, and many more I can't remember their names)…and even chemo’s created for me by Hodgkin’s specialist Dr. Sandra Horning ( she called them special cocktail for Marcel) hehehe.
I was taking immunosuppressant’s after my second BMT high doses of Gengraff and the trial was gonna start soon. So one of the fellow (Dr. Logan )who was new on my case in one week he took me off Gengraff. 2weeks go by i have no side effects. However in the few month earlier starting around November 2009 water was piling up in my chest. I only use 60% of my lungs already because the tumor pressed on my lungs and shut 40% off permanently. in April before I start the SGN35 trial a PET scan must be done so we can keep track of any progress of growth...I was really tired, exhausted, I can could hardly talk or walk. Shortness of breath even when I talk. I coughed till I threw up 3 to 4 times a day all what came out was just water. I thought that's it these are my last days. We went me and Angie to see Dr.Logan and i told him "man I think I am really sick and dying". He laughed and told me that the scan showed my right lung is under water so I was living on half a lung since my left one is more damaged from the old tumor. He said" man if you could tolerate that for all these months SGN35 will be a cake walk for you". Me and Angie were so happy i got admitted to same day for one night. They drained a water bottle that fit 1000 ML and big syringe that fit 350 ml. All that came out from my back with a big tall needle around 10 inches long anyway the next morning I did and Xray that showed there is no more water it was all drained. I left the hospital immediately I noticed that Ican breath walk talk hell even ran to the car but got exhausted.. I think I over did it loool.
I met with trial manager, she explained to me about the SGN35 trial and how this was the third year only, there is only 20 patients at Stanford and 20 at a hospital in Texas. I have to admit I prayed harder then ever to be able to get on this trial. With all the issues that was in my way when the time came I was ready.
She said it was able to put 70 to 75% of hard cases like mine in remission. I felt really blessed to be a part of something could be a cure finally. She told me the side effects that could happen, loss of weight, nausea, muscle ache , tingling in hands and legs...I was really excited that there is no new side effects because most times all what I got is nausea...
The first 3 treatments was the most awefull. First time the hook up small machine kind of like EKG to record the heart beats and activity for 2 hours. I could not even get on my Ipod because it interfere with the machine. 2 hrs went by i got the treatment 30 minutes IV. Then another 2 hrs of heart monitoring. I couldn't believe the minute they let me go home.6 days after the treatments i start feeling some cramps in my right thigh muscle. Not sever ones for few days and it was gone.
Second one was OK all what I had to do was some blood work check with my Dr. and am good for second round same issue happened again after 6 days from the treatment.
Third treatment was the same routine as the first one. I stayed up most of the night before so i could sleep those boring hours of monitoring.
Every 3 treatments I had to do a PET scan. The results were amazing the tumors a completely shrank only a small tiny shadow is showing. They said could be a scare tissue. From previous experiences when they tell me a scare tissue usually turns to tumors later. The doctor suggested to keep on going with the schedule and treatments since there is no side effects and to be more secure.
All the rest of the treatments had Heart monitoring for 2 minutes only. But is sucks because a middle eastern guy like me who chest hair is a problem. They had to shave spots only so they can stick those wire.
at treatment 5 I start feeling a small amount of numbness and tingling in my left hand. I report to the doctor she asked if i can write and button up my shirt pants, tie my shoe laces... I said "yeah I am able to do all those", she said ok for round five.
Round 6 was ok but the numbness and tingling is getting a little bit worst my left hand is always num 24/7 and my arm is getting numb in 2 sometimes 3 fingers. But still I was stubborn enough to take round 6.
A new pet scan is due. I feel so good so energetic so happy that the treatments is working. The result were "THE SCAN DID NOT SHOW ANY ACTIVITY AT ALL" I did not cry in front of the doctor I waited till I drove back home then it hit me. After 4 and half years of brutal fights finally for the first time ever there is nothing it is gone no scare tissue no nothing.Cars who stopped next to me on the lights were asking "are you ok?" what you would think a healthy looking man on the outside, music blasting like crazy ,windows down sun roof open on a nice sunny day CRYING??!?!?!? I just smiled and said I beated Cancer for real this time.
Treatment 7 and 8 my hands got really bad I could not open a bottle of water I could not lift anything I could hardly walk without tripping I had no strengh at all. Doctors said it is from SGN. So I had my 8th and last treatment in August 2010.
My hands didn't start to get better till 2 month after my 8 th one. They are progressing but very slowly. I almost have normal feeling in the right one. but the left hand is still a bit numb i say it did improve by 75% since i finished treatments.
Doctors said if I can tolerate the side effects it will go away in few months they can not be exact since each body tolerate things differently.They offered me a medication as a possible solution that might help but it had not so good side effects could make things worst. I said no thank you i can wait till they get better and save me from possible side effects.
My next PET scanner should be around the end of April. I just pray that everything is still the same and I hope that SGN35 will be available for all cancer patients who need it.
Thank you all for reading I tried to be brief but there is so much to talk about. Please if you any questions feel free to ask.
Marcel
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15 comments:
i read all of this in amazement. I can't imagine what you were going through but I understand that it would take one strong man to fight this. At times like this, we thank God almighty for his mercy. I hope you and your family are continually blessed.
Thank you sarah god bless everybody specialy people who going threw this hard sickness.
I just want to Thank you for sharing your story. My husband was disagnosed with Hodgkin's in Oct. 2006, he too was told to be "thankful" for the kind of cancer he received. He has also gone through numberous chemo. ABVD, mini BEAM, Allo transplant (his little brother as his donor), ICE, EPOCH, Zolinza, Galixamab. He most recent PET scan 03/02/11 showed much progression in his left lung and the cancer is now moving into his spine. His Oncologist referred him to a Dr. at The Cleveland Clinic on 03/09/11to see about SGN 35. This dr. told us that the trial is not opened to those who have had an all transplant and the only option was Rituxan to alleviate some sypmptoms. On 03/17/11 his oncologist called and said he will be able to get SGN 35 as they are opening the trial to those who have had an allo transplant. Reading your story gives me so much hope for our future. Thank you and God Bless!
thanks so much for sharing. My 20 year old son went through much of what you did. We just brought him back to Orlando from MD Anderson in Houston where he just started his first round of SGN35. he has already failed another clinical trial called Mk2206. He is on oxygen 24x7 and has a catheter in his side because he is building up fluid in his lungs all the time now. this SGN35 is basically his last chance. After reading your story.... We are hopeful
I was the first one to take sgn35 who already had 2 BMT however I kept insisting. Now we have a fighter in romania he gone threw everything almost and he started his SGN35... I guess in romania there is no FDA to control the trials... It is still taugh in USA to get SGN35
Hi there, yesterday evening I was surching the internet for info on SGN-35 and came upon your story. It is, beside the clinical results from the trails in Seattle, the only story I could find about someone who has excerience with SGN-35.
I live in the Netherlands and my almost 24 years old son is fighting against Hodgkin's for almost two years now. He has had all sorts of treatments, lots of different chemo's, radiation therapy and last january an auto stem cells transplatation. Nothing helped, except for the radiation therapy, his primairy tumor is (after 6 months) still in remission.
Yesterday we heard that the petscan showes that the Hodgkin is starting to get active again in verious places in his body. His hematologist from the UMC Radboud in Nijmegen has now sugested to put him om SGN-35. It is not available in The Netherlands, but he can get it from a hospital in Colonge in Germany. My son has all the luck in the world that his specialists, he has more that one, are determent to find anything that give his a future again. Sure nobody knows what the effects will be on the longterm, but the results are very promesing.
You story gives me strength and hope for a better future for my son, and his girlfriend.
I have a question for you, did you know upfront that you would get 8 treatments, or where they stopped due to the side effects, and what was the interval between the treatments, my son will be getting one infusion every three weeks.
I sincerly hope your next petscan will be as you pray for and that you will be in remission for ever.
Thank you Lian. The plan was to take 16 treatments, 1 every 3 weeks. The doctor stopped my treatments after 8 due to the side effect and I was in complete Remission. My 6 month Check up PET scan should be in the beginning of may. The results are promissing. Keep your hope up :).
Marcel,
How were the results of your May
PET scan?
I have been fighting Lymphoma for
15 months now. My oncologist is waiting for the FDA to release the sgn-35 to use for me. It is my last hope.
Linda
Hi Marcel,
How are things going? are you still in remission?
I've been battling HL since 2006 and like you nothing seemed to work.
It's now in my bone marrow as well as other small nodes. I'm waiting for SGN35 to be released worldwide in a few months. I have to pay for it myself but hopefully it will save my life.
All the best for a long a healthy future! ...Ron
My
My daughter is 21 years of age. She has been fighting Hodgkins for 2 years. She has gone through all of the rounds of Chemo and radiation, more chemo, stem cell therapy and finally SGN-35. Well the SGn-35 is at round or treatment 8 and she was doing great until last week. The oncologist is afraid that she has developed new cancer in her neck as well as possible toxicity in her lung.Is an ABLO transplant more successfull considering the cells come from a sibling. I would apprecite some advice and answers. I m on pins and needles. Thanks.
My son was diagnosed in 2009 with stage 4B Hodgkin's and went through the standard chemo (ABVD for 4 months) with no response. We were referred to Stanford for consult and he began BEACOPP protocol for 5 months, with negligible results. His tumor was very large and occupied the upper lobe of his lung. He was accepted into the SGN 35 clinical trial at Stanford and had immediate positive results. After 8 months, the neuropathy in his hands and feet became pronounced and he was taken off. His cancer is still in remission - Thank God. His stem cells have been harvested in case the disease returns and he needs to go through stem cell transplant. There is hope for everyone out there facing refractive Hodgkins. FDA approved SGN 35 in July for limited use and this monoclonal antibody is available under the name "Adcetris (brentuximab vedotin)". Ask your oncologist about it. May God be with you and give you strength to fight this disease.
Hi Marcel! How are you doing? I was reading your story and saw my journey with Hodgkins. I've also had standard (and not so standard chemo, incl SGN trial), radiation, auto and allo transplant. 2 years of clean scan, and now seems like it's back again. One lymph node that is so deep in my chest, my doctors cannot even do biopsy. So I've began my 3-cycle SGN marathon with the cell booster (from my donor - my little brother) to follow. Did you get the booster, sorry I don't know the proper name for it? How are you feeling? What is the latest on you Hodgkins? Please share. Thanks!
Thankful mom said-
Did Stanford agree to harvest stem cells? My daughter is not given this option and Stanford insists on her doing stem cell after SGN-35+brendamustine. I thought, she could just try SGN-35(Brentuximab) and wait , may be she has a long remission? I do not know what to do. She is 28, had Stanford V in 2008 , now all hell is back.
Please, please help us with advice.
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