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Now we're scared

PolyMom's picture

Submitted by PolyMom on Thu, 03/13/2014 - 7:22am

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DH has just started remicade for his psoriatic arthritis he was diagnosed 11 months ago. He just noticed a hard bulge in his leg, it may be lymphoma. He got a biopsy yesterday, and we won't find out until tomorrow or Monday. The remicade/humira do increase chances of getting lymphoma, but it was like 5 in 5000. I can't believe this. I don't know what to do or think anymore. We have enough on our plates with certifiable BM, and traumatized skids, and now this? I just don't know how I'm going to cope with this.

GhostWhoCooksDinner's picture

Submitted by GhostWhoCooksDinner on Thu, 03/13/2014 - 7:44am

Don't panic sweetie. Like you said, it's a 5 in 5,000 chance. I know it's hard not to though. I'll send positive vibes your way! We're here for you. Smile

overworkedmom's picture

Submitted by overworkedmom on Thu, 03/13/2014 - 7:52am

Waiting is the hardest part. If it comes back fine, you can move on. If not, you get a plan together. You guys will get through this. And like you said it is like .01% chance. Breathe. That is all you can do right now.

Sending prayers to you and your family!

Merry's picture

Submitted by Merry on Thu, 03/13/2014 - 10:07am

I had issues with Remicade too (also psoriatic arthritis). It's great stuff for the vast majority, but side effects for very few of us can be pretty serious.

Docs will figure it out. His rheumatologist should be all over this pushing for results. The waiting is definitely the hardest part of it. Hope you get an answer tomorrow instead of dragging it out through the weekend.

Sending hugs.

Amber Miller's picture

Submitted by Amber Miller on Thu, 03/13/2014 - 10:56am

I have a rare auto-immune disease. Like your DH, I too have had infusions and chemotherapy. I didn't get remicade but I was getting Rituxan. These drugs are powerful but can help. They can have side effects. I had some bad side effects and wasn't benefiting from the treatment. Due to this, I had to stop the treatment. When I stopped the treatment the side effects eventually resolved. I hope your DH's side effects will resolve. I know it can be scary and I'm sorry you both have to go through this. I hope the tests come back negative. Sending you positive thoughts......
Amber

PolyMom's picture

Submitted by PolyMom on Thu, 03/13/2014 - 3:14pm

Thank you everyone! DH and I really need the support right now. We're keeping this quiet for now because we feel pretty tapped out of the sympathy card after everything else gone wrong in our lives. If it turns out to be something, we'll let friends and family know, but it's so hard to go through this alone. I feel like I'm trying to keep my worry to a minimum so as to not upset DH anymore than he already is. It just is not the easiest thing in the world to do. Sad

PolyMom's picture

Submitted by PolyMom on Thu, 03/13/2014 - 3:18pm

***UPDATE*** Doc's office called to set up an appointment with DH for Monday afternoon. He wants to discuss removing the lump, and test results, which he won't have until Monday.

Dizzy's picture

Submitted by Dizzy on Thu, 03/13/2014 - 10:10pm

I'm keeping you and your hubs in my thoughts. (((hugs))) Draw strength from us here, or wherever you can to be there fully for him during this time.

PolyMom's picture

Submitted by PolyMom on Fri, 03/14/2014 - 11:29am

Thank you so much. It's very comforting to know there is somewhere I can go with this. It is a lot to bear.

PolyMom's picture

Submitted by PolyMom on Sat, 03/15/2014 - 11:53am

Thank you! I think the worst part of this is I know we'll deal with it if it's positive, but if he did get it, how are we going to treat the arthritis afterwards? It just feels like it's too much....we've got a quiet weekend, so we're just going to lay low, go out to eat, and maybe a movie or something. Thanks for all your support everyone. I'll keep you posted.

Pilgrim Soul's picture

Submitted by Pilgrim Soul on Sat, 03/15/2014 - 6:30pm

I am so sorry you are stressed by this latest develoment. I think a quiet weekend is just what the doctor ordered. Watch a movie to take your mind off of things, and i hope it turns out to be nothing serious on Monday. Your husband is lucky to have you by his side. Let us know how it goes. Hugs!!!

PolyMom's picture

Submitted by PolyMom on Mon, 03/17/2014 - 5:30am

DH told me he was happy we didn't dwell on it this weekend. We didn't really talk about it. I told him last night I couldn't sleep. He suggested I take one of my xanax. He asked me if he could have one as well. I told him no, b/c the prescribing doc specifically told me not to share them, to make sure kids couldn't get them, no sharing w/DH etc. I think he took it personally, and he decided to sleep in SS's room last night. I didn't take anything. Ugh. Happy St. Patty's day anyway.

PolyMom's picture

Submitted by PolyMom on Mon, 03/17/2014 - 3:10pm

***UPDATE***
Stage 0 melanoma. So, it's a tumor but really high in the surface or the skin, and he needs to have it removed. The doc will keep tabs on it to make sure it doesn't return, and he can stay with his regular remicade treatment unless it comes back. It's better than the worst, and that's all I can be thankful for. Thanks everyone for your support and encouragement!!

sbm014's picture

Submitted by sbm014 on Mon, 03/17/2014 - 3:43pm

So happy! I know y'all still have a rocky road with the removal etc but so happy that it isn't worse. Continued happy thoughts and prayers your way!

PolyMom's picture

Submitted by PolyMom on Wed, 03/19/2014 - 4:47pm

It really is. I'm spoiling DH with home cooked meals all week. Pot roast last night, beef stew tonight Wink It is a huge relief! Thanks everyone for letting me get it out in here. Keeping this stuff to myself isn't easy.