3rd treatment...minimal side effects

Marcel will get his 3rd SGN-35 treatment this comming monday (june 7th).  all of the Hodgkins symptoms seem to have vanished.  no more night sweats, severe pain in his chest, itching.  we can still feel the tumors that are close to the skin, but they arent bothering him the way the used to.  before he started this treatment he was between 10-15 oxycotin pills a day.  he hasnt touched the pills for about 3 weeks now. 

as far as side effects, they seem to be minimal.  he had some pain in his shoulders and knees a few weeks ago, but they have dissapeard.  for about a week a new side effect has popped up.  when Marcel lifts his legs, his thighs are very sore.  he notived this first when dressing one morning as he was getting dressed.  he said its liveable...and only bothers him when hes getting dressed, undressed or putting his shoes and socks on. hopefully it will fade as well.

for his next treatment he will catch the train home (i'll be working and he doesnt want me to take more days off) his mother is visiting, and shes never been on a train. plus the last time he recieved the treatment, driving home he said he felt confused and thought he was gonna get in a accident.   he didnt say anything to his mother because she doesnt know how to drive, and he didnt want to make her nervouse, but he was scared.  weird thing is....he's had tons of chemo over the past years (some chemos were even 3 day infusions), and never had chemo brain. its odd that a bag that only takes 30 minutes to infuse would finally give it to him.

i hope everyone out there who is recieving treatment for any type of cancer will be healed!
also if anyone else is on SGN-35 please contact me. i dont know anyone else who i can talk to about this treatment.

wishing the best to everyone!

Marcel started his treatment

I created this blog a few months ago because my husband relapsed…and Hodgkin’s lymphoma came back.


These past few months have been the most insane roller coaster of our lives. My husband was told he relapsed in January, and just last week (April 26) he started treatment.

We weren’t even sure what could be done. He already had 2 bone marrow transplants (1 auto, 1 allo; cells from his brother)…had every chemo…and even chemo’s created for him by his favorite Hodgkin’s specialist Dr. Sandra Horning.

So the only option was a clinical trial….and we almost lost that opportunity because he was taking immunosuppressant’s. they let us know he couldn’t participate in the trail….but by the grace of god, with help from Dr. Logan (only the most amazing man who actually answers all of our phone calls…and calls to check up on how marcel is doing). He is one of the assisting Dr.’s for Dr. Advani…and he really pushed for marcel to be in the trial….

These past months have been pure hell. We weren’t even sure he’d make it to treatment. Almost everyday the past month…my husband kept saying he could feel himself dying…. That really messed up my head. I couldn’t comprehend such a thing. The right side of his chest have visible tumor growth….if I put my hand there, its like a bunch of peanut M&M’s under his skin…I cant even touch that area because I start felling like I cant breath. It’s really hard to see your spouse going through such things…or to contemplate death….I can’t even begin imagine how he must feel.

So I’ll use this blog to write about his experience and progress with SGN-35….and also to write about how brain is wrapping around our life.
……………………………………………
Last Monday he had his first treatment. The weird thing compared to other chemo’s he’s received…this infusion only took 30 minutes (some of the chemo’s he’s had in the past were 24 hour infusions). But he spent all Monday at Stanford. They did an ECG on him for 2 hours…gave him the SGN-35, and then gave him another ECG for 2 more hours.

Then Tuesday, Wednesday, and Thursday he went each day for a 2 hour ECG. I have no idea why all the ECG’s…most likely because it’s a clinical trial.

We were told that many people had no side effects to the SGN-35…but I think he may be having some. For the past few days he’s been complaining of bone pain. And he has been having diarrhea …but hopefully these go away.

I’d really like to hear from anyone else who is doing SGN-35. I don’t know anyone personally who has ever done this treatment. I know that some respond…some people don’t… (I pray he responds)…. I’d just really like to find an internet support buddy…ha-ha. Preferably a spouse.. of someone who is going through the same thing.

I didn’t do much research on SGN-35 because we thought he didn’t qualify for the trial, so I put it out of my mind.
……………………………………………
My husband’s mother arrived in the states this past Saturday…so hopefully that lifts his spirits and helps aid in his recovery. She will be here for 2 months :)

Marcel will start his treatment soon!

everyones prayers have done something special..
Marcel will begin the SGN-35 treatment on April 26th. i've been really nervouse about saying anything online...i've been avoiding blogger because i dont want to jinx anything. 
i just really hope this happens...because my husband scan showed relapse in January...and he hasnt got any treatment yet.
things are getting pretty bad at home....i havent had a good night sleep in over a month. Marcels hodgkins is progressing really fast (months of not having any treatment will do that)....he is up all night itching, coughing, sweating...adn hes even been talking in his sleep so much latley. sometimes in the middle of the night he will just start talking to me, asking me questions. i will agree with anything he says, and once he woke up as we were talking and got mad at me for lying to him ..he asked me where we were gonna go...so i told him to san francisco.  he sat up and asked, why i was playing with his head while he was sleeping?  i tried to explain to him that i didnt want to wake him...so i just go with whatever he says...

i trully believe everyones prayers have trully been a blessing...because i'm honestly not sure how much longer Marcel can hold on without treatment. he's been asking me latley if he's dying. and i dont know what to say...so i tell him "every day  everyones closer to death" ...i'm horriable with words in tough situations.

so his first appointment will be on April 21st to get his schedule for the SGN-35 ....i hope everything goes fine.

just one more thing...through all of this...Marcel has still been going to work everyday. he refuses to quit his job...he comes home exhausted, but he says its better than doing nothing.

a post from Marcel

i just wanted to share a note my husband added to his facebook. i was surprised when i read because he usually keeps everything inside.
its pretty depressing , but i thought i'd let you see whats going on in his head.
thank you everyone for all of your prayers!



----------------Latest news about my sucky ass lifeShare


Saturday, February 20, 2010 at 6:21pm

oh boy long time i haven't write anything in here .... I don't know where to start!?!?!? 3 weeks ago doctors said my cancer is back,some news ha. so we made an apoitement with some leukimia doctor and the plan was to get on SGN35 clinical trial because basicaly i have done everything there to be done abvd , ice , something i forgot the name , bone marrow transplant , radiation , some chemo kocktail created just for me , radiation , another bone marrow transplant and some more radiation. After me beating cancer 3 times already now it is back. SO thursday the doctor calls me at 8:30 at night to let me know that i do not qualify for the sgn35 because i am still taking some medication for the second BMT, so now i have to wait till the first to do another scan and see if they can do a biopsy on my chest and then we will decide what to do. I mean they are out of options but they can not say that....



During all this time my faith went down i almost stopped beliving in god... and now my faith is still shaky... i never asked why this is hapening to me but this time i do i want to know... I pray for god i had so much faith i had so much belive , i always was there whenever anyone needed me .... i just don't understand how this god function... and everyone keep talking about oh god said this oh god said that .... well why the hell god is not there for me when i need him ??? i always prayed for him and belived and argued with people for his name... i always thanked him in good times and bad times... like where is his justice that he keep talking about and everyone keep talking about .... where the hell is he while everything bad is happening to me... where is he all my life i had to work hard since i was a kid and now am sick like a dog and am still working and i am still trying to restore my faith but why?



i want to know what is so horrible i have done that these terrible things keep hapening to me???



IF GOD IS REALLY THERE HE HAVE TO HELP ME OUT BECAUSE I CAN NOT TAKE IT ANYMORE I HAVE DONE SO MUCH AND PRAYED SO MUCH AND I NEVER COMPLAINED ABOUT ANYTHING AND YET NOTHING GOOD CAME BACK TO ME IN RETURN AND YES IT IS TIME TO COMPLAIN FOR 4 YEARS AND I AM AWAY FROM EVERYTHING I LOVE TO DO ... WHY ALL THIS PUNISHMENT .... WHY DOESN'T HE PUNISH PEOPLE WHO RAPE AND MURDER OTHERS PEOPLE WHO STEAL FROM POOR PEOPLE OR PEOPLE WHO SLICE OTHERS BRUTALY ....... WHERE IS THE JUSTICE AND THE FAIRNESS HERE???





AGAIN IF GOD THERE I WOULD LIKE TO MEET HIM BCZ I HAVE SOME QUESTIONS THAT NEED ANSWERS.



-------------------

looks like SGN-35 isnt going to be our cure

i was so excited earlier this week. i was going scan marcels treatment shcedule and post it.....unfortunatly last night we receieved a call from one of the doctors  (from Dr. Advanis team). he told Marcel that he couldnt do the SGN-35 because he was still taking immunosupressants. he's currently on 200 mg a day..but is only allowed to taped 25 mg a week..and maybe not all the way or else he could get severe graft vs host(that means that his cells and his donors cells will have a war inside of Marcels body).
so where are we at? we have no idea.
all we know for sure is that Marcel has a another scan scheduled for March 1st.
i'm really depressed...and trying to not let my husband see what a basket case i've become....but its hard.  his symptoms are exhausting him...and he has so much pain in his chest.
im just praying for a miracle.

SGN-35

Today Marcel finally seen his oncologist. (they canceled the one he was supposed to have on monday).
i dont have much news to offer because i'm not sure i completely understand enough.
what i do know is ....that the best option he has is to be part of a clinical trial. 
SGN-35 is the name of the drug they want to give him.  it hasnt been approved by the FDA yet. but its showing promising results. Dr.Advani said that 40% of people in Marcels situation respond to this drug.


before marcel had his most recent bone marrow transplant, SGN-35 was something that they were looking at for him...so we've heard the name before, just have no info on it.


so im on a internet scavenger hunt for info :)


i've still been learning about the alkaline diet as well...and have decided i will change my kitchen into a alkaline friendly food place starting the 1st of March.  i will write more about that later.
......
this week a friend (who is undergoing treatment for breast cancer) lost her husband to lukemia. i feel really bad, because what do you say to someone who just lost their spouse?  i only know her online...but i'd like to send her something appropriate..any suggestions?

Appointment with Dr.Advani

We are still waiting for the appointment maker to call us about his Appt. he needs with Dr. Advani.



Marcel is sad that his previous Lymphoma oncologist (Sandra Horning) is no longer here at Stanford. She was amazing! She had battled cancer once (not sure what type). She was the #2 Hodgkin’s doctor in the world. When marcel went to see her 2 years ago, she created a personalized chemo for Marcel, and it knocked the cancer out in 2 treatments (they were just planning the cancer to shrink to prepare for the BMT). We found out that she left to work for a pharmaceutical company  hopefully she is creating new chemo’s that will save many lives! She was all about the patient, Marcel loved this because he was used to the Dr.’s talking to his father when we lived in Lebanon….then when we arrived in the states, most of his Dr.’s would speak to me…I have no idea why??? But Dr. Horning would give me a small “Hi” and focus completely on Marcel…and if I interrupted, she gave me a look, and then turned her whole body toward Marcel. I know it doesn’t sound nice, basically since she was a patient once, she knew the ins and outs.






Waiting is the worst… it’s been driving my mind crazy. But in the craziness I’ve tried to be a little pro-active.


Has anyone ever watched Dr. OZ? I don’t watch prime time TV much because I’m always at work….but I usually catch Thursday episodes of Dr. OZ. The stuff he puts on his show always gets me thinking about healthier ways to live. Well on a recent episode he was talking about the “Alkaline Diet”. It’s not really a diet; it’s more like choosing the foods that are best for your body’s PH system. And he made a statement that makes me want to live this diet in our home. He said “if I had cancer, I would be on the alkaline diet” I don’t know much about it, but basically everything we eat is either an acid or an alkaline. He said that the reason no one ever gets heart cancer, is because of the PH system in the heart is Alkaline. Supposedly the best foods to eat are alkaline and ideally we should be eating 80% alkaline and 20% acid. I will research this all week…and see how it works. I think that I may even keep track of our menu here. When we start it.


…..


I just got a call from the appointment setter; his appointment is February 8th at 9:15am…..


……………………………………


I just want to thank everyone for all of your prayers and kind wishes. It really means a lot to both Marcel and me. Monday I showed him both this blog and my personal blog…honestly, he was crying when he read the kinds words of those he doesn’t even know. It means so much!


Thank you all!

the short story.....

i decided to start this blog so that i can be open and honest about my husbands journey with Hodgkin's Lymphoma.  to begain with i will copy and past a post i made yesterday on my personal blog.

.................................................
Wednesday, January 20, 2010


Marcel relapsed

if youve read my blog for a while..you know all of the struggles my husband has been through.

i'm at work...and just got back from Marcels follow up Dr. appt to give the results of his recent scan. he relapsed and has Hodgkins Lymphoma again.

what does this mean for him...i have no idea.

Marcel was first diagnosed in Lebanon on his birthday in April 2006. we think he may have had it since the summer of 2005, because thats when we noticed swollen lymph nodes under his armpit. he casually asked a pharmacist and they told him it was an infection so they gave him antibiotics. (anyone who lives in Lebanon knows that many people use the pharmacys as a advice nurse, and usually treat themselves because many drugs dont need an actual prescription).

he started chemo in Lebanon, and in July 2006 when the war happened, we came back to States durring the evacuation. he only missed his next chemo by a few days...and then he was set up here with a new doctor and resumed treatment. so from August 2006-October 2006 he was getting his basic chemo...then they told us the cancer was growing. they started giving him a series of high dose chemo..and in december 2006 they reffered us Stanford and told us he needed a bone marrow transplant. so the long journey begain. he had his first bone marrow transplant in march 2007. they used his own cells for this. he received a clean scan in august 2007. in spring of 2008 he had a follow up scan. it came up very bad....so they told him he needed another bone marrow transplant using his brothers cells. first they let him return to lebanon for 2 weeks before starting treatment (just in case). they gave him a lot of high dose chemo...and then in august 2008 prepared him for his 2nd BMT. he received his brothers cells in september 2008.

since then he has had scans every 6 months..and we are always so grateful to get good news.

today they told us the scan showed new growth in random places.

the plan right now is...he will see the hodgkins Dr. within 3 weeks...and return to his BMT doctor within 6 weeks. she (his BMT Dr.Laport) said she's like him to get more chemo and then go from their..maybe even start out with an oral chemo??? we've never heard of chemo in a pill. but we'll see what it does.

honestly i dont even know what i feel. i dont think he knows what he feels eaither so i will wait to ask him. give it some time to digest.

please no matter your relgion....please keep my husband in your prayers.

i know that so many people out there have things worse..and were lucky to have some options left. i know that we are blessed...but i dont want my husband to go through this anymore...i want him healthy!