I haven't been on much in the last few months. I was diagnosed with papillary thyroid cancer in early April. I've had two surgeries to remove my thyroid (the tumor appeared benign after the first surgery (4/1) so they only removed the right half of my thyroid. Tumor came back as cancer so I had another surgery on 4/8 to remove the rest.) I will be having radioactive iodine ablation sometime in the next 4-6 weeks. The delay is because they will be using Thyrogen to increase my TSH levels without taking me off of my Synthroid so I won't have to deal with being hypothyroid for weeks before I get the radiation treatment. The catch is, it takes 3-6 weeks to obtain Thyrogen for whatever reason. I will have shots of Thyrogen on days one and two and then report to the hospital for the radioactive iodine in pill form on day 3. I will then spend about 3 days in the hospital in isolation then a few days more at home in isolation. I'm not looking forward to being away from my kids or my husband and dogs, but I am very comfortable with the decision to go ahead with treatment. It will make monitoring for recurrence easier and that's important to me.
Has anyone else had thyroid cancer or know someone who has? Anyone gone through the RAI (I-131) experience? If you did have thyroid cancer, had you been on Methotrexate or Orencia for your PsA?
I saw the rheumy today for the first time since January. In January we knew that I had a mass on my thyroid but didn't know if it was cancerous or if I would need surgery, etc. I hadn't had the biopsy yet. I was also very sick with a terrible respiratory infection in January. Because of all this, I went off of the Methotrexate and Orencia and I have been off since. I didn't think I was having great success with the medications but I sure did notice a drastic increase in pain and swelling once I was off of them. Having been on pain meds following the surgeries and then 12 days of Prednisone for bad poison ivy, I hadn't been feeling too bad recently, but the last few days have again been bad. My fingers are very swollen and painful. My shoulders and back are really stiff and painful. The Rheumy was very excited to tell me about Otezla. She said that she would not put me back on Orencie or Methotrexate at this point due to increased risk of cancer. She said that risk has not been found with Otezla. She also said the risk of liver damage has not been found like it has with Methotrexate. I have not yet done research myself on Otezla but it sounds like a great option for me. I have seen that there is an increased likelihood of depression which is somewhat of a concern, but I'd be willing to try it out and see.
Has anyone else done research on Otezla or is anyone else taking it? I've had very limited luck with all of the other medications so I'm really hoping that this is as good as it seems but it seems almost too good to be true. The fact that it's so new worries me.
All in all, despite everything, I'm keeping my chin up and pressing on like I always do. What choice do I have? My family needs me! I was out of work for 3 weeks with the surgeries and will need about another week off plus appointments in the near future. My work, on paper, is being supportive although I've gotten some attitude from my most immediate coworker. That really hurt me. I didn't ask for cancer. Still, my head is held high and I look forward to being done with this all. I'm really excited for warm weather and sun!
There have been a number of discussions about Otezla you can search that or apremilast. My sister went through the thing although she did just the radioactive think she did stay with us throughout. Other than getting a bit lonley as she had to seperated from the family and we left her meals out side the door but skyped a lot. It was a week 10 days as I recall. In fact we set my lap top at the dinner table on a upside down garbage can in a chair my wife dressed to look like her. We were recommended to have the septic tank pumped when all was done. My granddaughter spent hours in the back yard in a tree with a pair of binoculars at night trying to catch a glimpse of her aunt who she was told "glowed in the dark" She still takes Enbrel and SSZ. It is a different cancer but nothing wrong with caution.
Sorry about your co worker. Its been a standing joke around here that should any of us ever get cancer our friends coworkers and neighbors would be lined up at the door with casseroles, but a nasty disease like PsA, we'd be faking it. I guess we won't hate you for blowing the cancer and casserole fantasy. Your co-worker will get hers as they say Karma is a bitch.
In any even be sure to get some good stretches and easy to do exercise during your sequestration,. its absolutely critical. Your body can rust stiff in days. And although I'm sure you have been told build a meal Thyroid meds schedule (no less than an hour) and separate it well from any other meds. My sister is very definite about this
You'll do great There are mothers who would do most anything for a few days of pure peace. This is even better than locking yourself in the bathroom and faking it. (any yes we all know moms do it)
Thanks everyone! Surprisingly, they called this morning and the hospital (Hartford Hospital) isprepared to give me my radiation next week! Not in 3-6 weeks like I expected. I'll have the Thyrogen shots Monday and Tuesday and get the radiation on Wednesday. I'll be in isolation 24-72 hours in the hospital depending how fast my levels drop. Scans on Friday and Wednesday of the following week. Holy cow! I can't believe it's happening so fast!
In CT? I've been at Hartford Hospital many times between me and my kids and they are good. I am very VERY close so if you need anything, just send me a shout.
Yes, in CT. I live in Eastern CT so I prefer to use Manchester or Windham but for this my doctor said Hartford is the best choice. I have a few doctors there. Thanks Robyn :).
Sorry to hear of your difficulties, Heidi but once you're well enough I do hope you and Robyn will get together! I am getting together with two other ladies from the PsA site at the end of the month. I joined this site for support and the friendships I made have been an unexpected bonus. I hope you two will be able to meet each other!!
