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Posted 5/17/2008 5:47 AM (GMT 0)
Many years back I had read about Remicade while on holiday in England.  I thought it would be great to take to get off a hold load of pills.  They also said it was the cure.  A great idea...Right....NOT. 

I have been off Remicade now for more than four years.  I did have a few very minor flares till last year in July.  Then bam what a feeling.  I real major one.  I spent seven months on ensure.  The sad part I kind of like the vanilla, chocolate and strawberry flavours.  February this year I had ileocolic resection.  Remission again I thought.  Well kind of...been having small bouts agains.  *sigh*

During my major flare I again read about "stem cell transplants"  and found that they were going to set up a location within Canada.  So I got all the paper work from them and started to fill in the upteen papers explaining my wonder "D"; tracking to do this.  It felt good.  So after my surgery I contact the University of Nottingham in England and told them that I had to have it done.  (It was good that I did the disease process has progress farther than I thought)  They said that I still met some of the requirement and to send to them all of my reports from any futher tests that were completted after my application went in.  (Yes I had been picked to be one of the 48 people world wide to have this procedure) 

So seeing how I had moved during my flare to be closer to my children I contacted my old GI in the other city and got his secretary to fax me the results of a gastroscopy, colonoscopy, the pathology report and the barium follow through.   This was going to be good I thought seeing how I could scan them and forward to the university of Calgary right away.  NOT

I started to read the reports and found that they had seen a growth in my stomach that wasn't a granuloma it was a  lymphoplasmacytic inflammatory infiltrate.   It was not caused by H. Pylori.  With this I also found out that I have a nodule in my lung.  I have to wonder if these are due taking Remicade.  

After receiving the reports I faxed them to my current GI's office (who wanted to put me back on Remicade).  In my letter to him I said there is no way I am going to take any Remicade.

Please understand I am not looking for pitty.  I have had a great life.  I have luckier than most....traveled the world...driven nice cars in the past....and I have three wonderful adult children.  I have had a wonderful life.

Shoshanna
 

Post Edited (Shoshanna) : 6/1/2008 5:01:04 AM (GMT-6)

Posted 5/17/2008 10:12 AM (GMT 0)
Shoshanna, what a horrible and confronting story. I'm so sorry this has happened to you, and I'm sorry, too, that you had to learn of your lymphoma through some faxed reports instead of being told in person. That seems very wrong to me. I'm so sad for you: both for your situation, and for the way you have been treated.

I can't think of anybody on this board who has been diagnosed with NHL, though we have had a member diagnosed with HL. However, this is a big forum and I can't keep track of everybody and I hope someone will be along soon to share their story with you so you don't have to feel so alone.

Please do keep posting here and letting us know how you're getting on, and how you're coping.

Ivy.
Posted 5/17/2008 11:48 AM (GMT 0)
I am so sorry you have to deal with all of this. I had a few Remicade treatments back in the day but one treatment I had a bad reaction to it and landed in the hospital for a week. I haven't had any since then.
Posted 5/17/2008 9:37 PM (GMT 0)

shoshanna, really sad to hear about that since I'm on the verge of transitioning from Pentassa and Entocort to Remicade Infusion as recommended by my GI's.  I really have very serious reservations due to the possible side effects; however, I do not want to go against doctor's recomendations.  I have only been diagnosed with Crohns since 8/2007 when I was hospitalized for a week with distension and severe pain of the lower right abdomen.  I really have no idea exactly how Crohns affects people!!  I do not have the symptoms I have seen such as weight loss, diahrea, pain when eating, etc... I am almost in the belief that I am in denial that I even have Crohns even though all testing and two doctors have said otherwise.  What actually are the symptoms? How badly should I be feeling? What in the world is a tag or fistula?  Yes, I feel fatigued and have occasional diahrea, I also have night sweats, swelling of joints and feet, and most definitely have had a change in appetite.  Personnaly, would you recommend the use of Remicade, or, would you consider surgery as the better option?

Wishing you well,

Rog

Posted 5/17/2008 11:58 PM (GMT 0)
Hi I hope you can get some good help and just want to say that I'am here for you. Thanks for sharing about the Rem. sideffects.lol gail
Posted 5/18/2008 12:45 AM (GMT 0)

Thank you, Gail.

Good health to ya,

Rog

Posted 5/18/2008 9:49 AM (GMT 0)
Shoshanna, it's been 24 hours and I can see that you don't have any constructive answers yet. Would you consider popping over to the arthritis forum and posting your question there as well? (Just change it a bit so it's not a duplicate post, which aren't allowed on HW forums). The arthritis people have been using biologics for longer than we have, so you might be able to get some help there.

I really am sorry that this has happened to you.

I.
Posted 5/19/2008 2:57 AM (GMT 0)

I am so sorry that you had to discover your serious diagnosis on your own. Frankly, those who withheld the information from you are either cruel or incompetent.

There is a member here, Mike f, that had a resection. The pathology of the resection revealed that he had lymphoma. I believe that his was determined to be Hodgkin's but don't take that as gospel. He had been on Remicade for sometime prior to this discovery.  One year following his last chemo he is cancer free. I know that Hodgkin's is different that non-Hodgkin's, but it does show hope.

Mike f doesn't stop by HW often anymore. He does have a blog that you can read. It details the discovery of his cancer and the treatment. http://www.mfischer.com/topics/cancer/

Please keep us updated. Know that we are here to listen/read to any outpourings. Bless you.

Posted 5/19/2008 7:25 AM (GMT 0)
Yes, Mike's cancer was Hodgkin's. He was the person I was referring to before. Thanks, Ides. I couldn't remember his name.

I.
Posted 5/19/2008 5:48 PM (GMT 0)
Shoshanna, sorry you are going through all this. My sister-in-law had non-Hodgkins lymphoma (she does not have an IBD nor was she on any medications). She had a bone marrow transplant (her own since no one in the family nor anyone else were a match). This was in 1993. She went through radiation, chemo, etc. All at Johns Hopkins. She has been cancer free since. She was 31 at the time with a one year old son. I hope everything goes well for you.

Posted 5/19/2008 11:02 PM (GMT 0)

regorluap said...

shoshanna, really sad to hear about that since I'm on the verge of transitioning from Pentassa and Entocort to Remicade Infusion as recommended by my GI's.  I really have very serious reservations due to the possible side effects; however, I do not want to go against doctor's recomendations.  I have only been diagnosed with Crohns since 8/2007 when I was hospitalized for a week with distension and severe pain of the lower right abdomen.  I really have no idea exactly how Crohns affects people!!  I do not have the symptoms I have seen such as weight loss, diahrea, pain when eating, etc... I am almost in the belief that I am in denial that I even have Crohns even though all testing and two doctors have said otherwise.  What actually are the symptoms? How badly should I be feeling? What in the world is a tag or fistula?  Yes, I feel fatigued and have occasional diahrea, I also have night sweats, swelling of joints and feet, and most definitely have had a change in appetite.  Personnaly, would you recommend the use of Remicade, or, would you consider surgery as the better option?

Wishing you well,

Rog

Hi Rog,

I had my resection done because I needed it.  Wasn't able to eat and was very sick.  I had an obstruction so there was nothing more but to have it.  As for Remicade it is a good drug that is good for others but just not what was good for me. 

Shoshanna


Posted 5/19/2008 11:04 PM (GMT 0)

ivy6 said...
Shoshanna, it's been 24 hours and I can see that you don't have any constructive answers yet. Would you consider popping over to the arthritis forum and posting your question there as well? (Just change it a bit so it's not a duplicate post, which aren't allowed on HW forums). The arthritis people have been using biologics for longer than we have, so you might be able to get some help there.

I really am sorry that this has happened to you.

I.

Thank you Ivy I think I will.

 

Shoshanna

Posted 5/19/2008 11:07 PM (GMT 0)

Bennie said...
Shoshanna, sorry you are going through all this. My sister-in-law had non-Hodgkins lymphoma (she does not have an IBD nor was she on any medications). She had a bone marrow transplant (her own since no one in the family nor anyone else were a match). This was in 1993. She went through radiation, chemo, etc. All at Johns Hopkins. She has been cancer free since. She was 31 at the time with a one year old son. I hope everything goes well for you.

Hi Bennie,

this does give me hope but wonder what type of non-hodgkins lymphoma your sister-in-law had?  There are many types and they all have a differnt outcome from what I have read.

I wish your sister-in-law a cancer free life from here in.

Shoshanna

 

 

 


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