Scared and Overwhelmed Mom...Help!

Hello Everyone! I have not posted in awhile, as things have been stable around here, and my two teenagers with CD have been enjoying remission since April! But the past 2 weeks have been horrible and I have been up all night, worried and scared, and I just needed to vent to some wonderful folks who understand.

Two weeks ago, I took my almost 16 year old daughter for a back to school physical with her pediatrician. During the exam, the MD found a lump on my daughter's neck, a rather large lump-it was visible from a distance when my daughter had her head back! The MD told me it was on her thyroid gland and needed to be followed up with immediately b/c of my daughter's history. Olivia is on Humira since April after failing 6MP (was on that for over 4 years). She had a bowel resection in 09' after 2 doses of Remicade that failed miserably because Liv had severe scar tissue in the diseased bowel and ultimately suffered a small bowel obstruction. The resection went well, and my daughetr did well until April when a colonoscopy showed lesions and mod reoccurence of the disease at the surgical anastomosis site...she had symptoms and the 6MP wasn't holding her. We opted to try the humira, which was the next step up (GI was reluctant to retry Remicade for fear of a reaction).

Well, the humira worked great and has kept the Crohn's quiet, but now back to the thyroid. A sonogram and biopsy were done on Tuesday, and I got the phone call last evening that my daughter has a papillary thyroid carcinoma. The humira has been on hold as per our GI-he did not want her to have it just in case we got a diagnosis of cancer. Olivia will have her thyroid gland removed, and they will biopsy all adjacent lymph nodes to check for cancer cells.

I'm told the outcome is excellent with this type of cancer-100% survival rate, but I am so worried about that T-cell lymphoma that you get warnings about when starting any of the biologic drugs-this might sound far fetched, but what if the cancer started in the lymph nodes and spread to the thyroid gland?? None of the doctors could answer that question...we will not know anything until after the surgery.

I am trying to stay positive, especially in front of Olivia, but I am sick to my stomach with worry..hoping and praying all will be ok. In the meantime, her CD treatment is on hold and I fear a full-blown flare-up is right around the corner..GI is not sure how he will treat her, perhaps steroids to keep things at bay since her CD is quiet for now.

My 18 year old son who was diagnosed last year, also failed 6MP, and started Remicade in April..this past week he has had 2 bloody stools and some cramping...maybe a flare?? Or is the Remicade losing effect???? Oh my goodness, when it rains, it really does pour! What is left for my children? Has anybody tried some of the newer meds? I am doing ok with the cancer diagnosis for now, but I am terrified of the CD flaring, Liv gets so sick when the Crohns acts up.

Sorry this is so long,I just needed to vent-any input would be greatly appreciated. Thank You in advance!!!

Livilou


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I broke your posts into shorter paragraphs, to make it easier to read. Best wishes to you and your children - Ivy.

Post Edited By Moderator (ivy6) : 9/24/2011 6:59:27 PM (GMT-6)

How terrible for you and your kids to be going through so much. Hugs to all of you.

Thyroid cancer is highly treatable, but going through it is still hard.
Since docs want your daughter off the Humira (probably all immunosuppression), the only thing I can recommend is not giving your daughter any of her trigger foods and maybe even switching her to a strict CD friendly diet that works well for her. I don't know if it will prevent a flare up, but if you're desperate, it's worth a try. Also, your son, since it sounds like he is flaring as well.
I usually do a very bland, low fiber, all natural and gluten free diet. No sugar, no processed or fried foods (or dairy).

Have you tried a strong multi-blend probiotic for them? Check with your doc, especially for your daughter, given her circumstances.

Will your daughter have to do radiation after surgery? Hopefully, it will have a positive effect on her CD. Have the docs said anything about that?

I wish you all well.

I'm so sorry you and your children are going through all of this. My sister in law recently had thyroid cancer that spread to one of her lymph nodes and had to have the surgery and iodine radiation treatment. She had to be on a special diet prior to the radiation treatment. the good news is that she is doing great and her docs do not expect any recurrence of the cancer. She does not have Crohn's, and I understand and empathize with your worries. I hope all goes well for them.

I completely understand your worry and anxiety; I have and continue to experience so much anxiety with my husband's health. I hope the surgery goes well, and the cancer cells are just in the thyroid. I will be praying for you and your daughter. I can only imagine how hard it must be for you to hold it together for your family right now. (((Hugs))).

I think right now you have to learn in the moment. Every time you get overwhelmed with anxiety, ask yourself if your anxiety is helping anything. Also sleep right now is really important for you - it's easier to hold on to hope when you have had some rest. So, if you need some sleep meds, call your doc and get them. I take Xanax when I find I am overwhelmed with anxiety - and it helps me relax my mind and sleep, which keeps me functional the next day.

Think positive thoughts. What you know is that there are cancer cells in her thyroid, nothing more. So, try not to let your mind lead you into scenarios that have not (and hopefully will never) come to pass. This is a really hard task, but it is the only way to get through the next few months.

When is her surgery? As far as keeping her crohns inactive, I think the docs are going to prefer meds that don't muck around with the immune system, so the 5-ASA meds are probably what they'll try to maintain her on. I also recommend keeping to a known safe foods and maybe supplementing with ensure. Probiotics are also a good idea as others have mentioned. Maybe docs will be ok with entocort if needed.

PV

Just wanted to add my healing thoughts and prayers for you and your children. It is so hard for a mother to watch her children suffer. Take care of yourself so you will be able to give them the support they need. Sending (((HUGS))) to you and hoping for a good outcome.

Potty Pooper

Ahhhh Livilou...you're daughter and I sound extremely similar! While on Remicade and 6MP I was diagnosed with papillary thyroid cancer. No one knows if either of the drugs caused it, if it just helped it along, or if it was already there. It's all unknown.

I had the total thyroidectomy- the cancer did indeed spread to the lymph nodes and I had to have those removed as well. But it spread to the lymph nodes not vice versa!

After that, I underwent the radioactive iodine therapy. It removed all of the remaining cancer cells. She will have to go on a low-iodine diet prior to RAI- I'll warn you now, it is not fun and is especially hard for Crohn's sufferers.

I'm actually at about the one year mark right now since I've had my RAI and I am on the diet now. I will be having a full body scan next week to see if the cancer came back.

The really good thing is is that thyroid cancer is easily treatable. But I'm not going to argue with you that you should be concerned about a Crohn's flare.

Once I was diagnosed with cancer, I had to go off both the Remicade and 6MP. Then all he!! broke loose. I was no longer on any Crohn's rx because of the fear it may influence the cancer more and I flared right up. I was on Remicade for a perianal abscess and several months after going off it, the abscess came back in full force. I had to have an ileostomy as well as multiple surgeries on my abscess. The cancer definitely put a major wrench into things.

In April I finally convinced my doctors to put me back on a biologic. I am now on Humira and showing some improvement. However, I went on it, understanding the risks. It could possibly cause more cancer. However, I was in no pain with cancer and was/still am suffering terribly from Crohn's. I would rather have thyroid cancer again than deal with Crohn's.

I hope I did not scare you too much. Just be prepared and do plenty of research! I am more than happy to correspond and help you and your daughter in anyway possible! Your daughter's and my cases are quite unique- none of my doctors (and I have quite a few) have ever had a patient with both health issues. Unfortunately, it does complicate things. I am here to help in anyway I can! My email is in my profile! Contact me with any questions or just for reassurance!

It does get better and easier. You both can do it! Stay strong! Lots and lots of hugs!!!!