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Hurthle Cell Carcinoma Free

LBlackman
Posts: 113
Joined: Mar 2011

I am six years out and have had all my scans come back clear. I have only done the low iodine diet for my last scan. I wasn't strict about it until the week of my scan. The techs and Drs said that was fine. Everything looks good so now it will be interesting to see what dose of synthroid I end up on. They have been keeping me hyperthyroid since my diagnosis to prevent a recurrance, but it is my understanding they will back off of that a little.....

nasher
Posts: 507
Joined: Apr 2010

That’s great news

I am glad you got your scan back.

personally I don’t see a problem remaining hyperthyroid from now on since there is always a chance of reoccurrence... please keep us up to date with any changes.

Craig

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Great news Lynn!

I agree with Craig, I'd rather be a little hyperthyroid than hypothyroid. Both to help prevent recurrance and to avoid the hypothyroid side effects. Maybe you're more than a little hyperthyroid now and they can back off and you'll still be a little hyperthyroid.

Alan

sfl67
Posts: 55
Joined: Nov 2009

Hi Lynne,

Congratulations on your great news! I am also a Hurthle Cell cancer patient, so we must remain diligent.

Wishing you well,

Shelia

sunnyaz
Posts: 582
Joined: Oct 2010

Lynne,

I am so happy to hear your news. I agree with everyone else, better to stay a bit hyperthyroid especially with a history of Hurthle cell. Congratulations make sure to celebrate!

Blessings,
Julie-SunnyAZ

LBlackman
Posts: 113
Joined: Mar 2011

Thanks everyone! I have been on vacation and am still trying to get caught up. It took me forever to get my results, but I am definately hsppy about them. I found a Dr. in my area, where another hurthle cell patient goes, so I am excited about meeting him and having another endo's opinion regarding the dose and side effects. I think I would rather remain a little hyperthyroid compared to hypothyroid but we will see what the new doc thinks...
thanks,
Lynne

boitchik
Posts: 10
Joined: Feb 2011

Julie:

I have read about your bouts with HCC on these boards. Presently mine has metastasized to lungs and progression over last six months is "moderate." Friend and family support wonderful. May have to decide between waiting (no symptoms yet) and going on clinical trial lists for inhibitors. All this is seven months old (since cancer discovered in lungs.) Top notch coverage (SKett and here in RI.)

Burt

sunnyaz
Posts: 582
Joined: Oct 2010

I am sorry to hear about your metastasis. I am actually a Papillary survivor with a B-RAF mutation. Similar to HCC in the rate of growth with metastasis. My doctors keep a very close eye on my lungs. Very aggressive with RAI to try to stop spread to the lungs. So glad you have friend and family support. This is a hard one for some. I had friends and family go into hiding so they didn't have to deal with my "mess."

If this were me, and I had to decide, knowing the mets are there; I would opt for the clinical trial. Maybe find out how the other patients have done on it and make a decision based on that. My theory on any type of cancer is to stop it in its path. Kill it or inhibit it's growth as soon as possible. Has your doctor considered Oxygen therapy? I.e. Hyperbaric chamber?

Blessings,
Julie-SunnyAZ

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Julie,

Are you on any of the B RAF inhibitors? My sister in law is dealing with melanoma and is also B RAF mutated. I believe she's considering going on one of the inhibitors. I don't know when though, she just started her Interferon regimen and I think that lasts a year, maybe you can't do both at the same time.

Alan

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Alan,

I wasn't aware that there was a B-RAF inhibitor. I will ask my Endocrinologist about this. They never considered interferon for me so I wonder why they never mentioned either. Maybe because I am currently in remission. My mom was going to do interferon for MS but the doctors decided that she was too advanced for it to work for her.

Thanks for the info. I will definitely look into it.

Blessings,
Julie-SunnyAZ

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Julie,

I don't think any of them are approved yet. I believe she is considering the one that is furtherest along in it's clinical trials. My brother didn't tell me the name, but wiki identifies it as PLX4032.

If RAI is still working for you, I don't think they would consider Interferon. RAI targets the cells you want targeted while Interferon is a shotgun approach. It has a lot of pretty bad side effects as well since it affects most bodily systems.

Alan

sunnyaz
Posts: 582
Joined: Oct 2010

I looked up the trials and the PLX4032 was the one I saw. As far as I know I have had almost the max dosage of RAI. They don't want to give me again. I guess I will have to take the wait and see approach if I have metastasis again. Thanks for the info.
Blessings,
Julie-SunnyAZ

boitchik
Posts: 10
Joined: Feb 2011

Thank you for your considerate reply.

I have had RAI with no "avidity" (i.e. no uptake) so struck out there. Meet with oncologists soon: there are a couple of possibly pertinent clinical trials going on and I will get recommendations.

I am very active, 69, masters swimmer. I have no serious lung compromise yet and breathing tests normal. (I assume you were referring to lung capacity work.) Also still testing and increasing synthroid levels post thyroidectomy.

With only seven months of 'realization' am still adapting to this. You sound vibrant and upbeat.

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