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I'm tired and need to vent!!!

Kelly19
Posts: 2
Joined: May 2003

I was first diagnosed when I was 13 years old back in 1984. I was the second youngest person in the US to be diagnosed. I had surgery and they could tell I had probably had the cancer for 6 or 7 years because my thyroid felt apart when they tried to remove it as well as 3 lymph glands. I had a week or two of testing at Sloan-Kettering in NYC (talk about extensive, I had to carry my pee around in a brown bag!!) I had a very high dose of I131. A year later I was free. Ten years later, on my sons first birthday (I was told I may not be able to have children because of my age and severity) I was cancer free. In 1997, I had a reoccurrence, which my doctor at the time, told me I had cancer and never called me back. Finally I found the great doctor that I have now- I had another I131 treatment in 1998. A week after that treatment, I had the follow up body scan and found I still had cancer and micro-matast. in my lungs. The one good thing about I131 is it can work in your body for up to 6 months- so because of that my lungs are clear, but my thyroglobulin has been elevated for 6 years. Since, I've had another baby, who like her brother is very healthy. I just had my eigth body scan and another thyroid ultrasound. The scan was clear and the ultrasound showed a nodule. I'm going for another needle biopsy- we're hoping that is where the cancer cells are hiding because my doctor locally and one that I travel to are perplexed- and well so am I. I am scheduled to get the new PET scan that has been proven to work well with thyroid cancer. Let me tell you, Thyrogen is a God-send. I've used it twice! For 19 years I have been going through thyroid "stuff"- yes, I know this is the cancer to get because it is so slow growing. I'm just tired- of calling my parents with "news", worrying my husband, explaining to my children why I can't hold them when I get tests, of weight gain. I'm 32 years old and physically I feel 50. After I was diagnosed at 13, I have had numerous medical problems and a lot of illnesses. For two months I have been tired, forgetful and my hair is falling out (not like when I am off my meds, but noticeable)-I told my doctor, but my levels are fine- so now what?! For me, this has been a long road, especially the first four and the last six years. I am amazed at the changes that have come to thyroid patients over the last two decades. When I was first diagnosed the doctors didn't know what to do with me because I was so young. Well, now that I have had my little pity party I feel much better. I don't really talk about all this or my feelings. It's hard to tell people how scared and mad you are when you see them feeling scared for you. If anyone has read all this I'd be glad to hear from you. If you have any questions Id be more than happy to help!!! That's why we have this wonderful site! Reading what some of you have written has given me renewed strength. I always try to keep a good attitude and I thank God everyday for what I have- even when I get a thryglobulin level back and it has remained the same or only went up a little- it's amazing how life can put things into perspective for you!KL

LMedlin
Posts: 21
Joined: May 2003

I know the feeling. I have been trying to find someone to talk to. I was diagnosed with cancer in March. I had the surgery in April. I am now waiting. I have to have the I 131 in about two weeks. I am really scared. I have been going through this and there is no telling how long i have have the cancer. They just dont know. I have had health problems for many years. Finally at in Dec. of 2002 I started complaining that i had a lump in my throat that was blocking my swallowing. That is how the cancer was finally found. I just kept insisting that the doctor take care of the problem. I have been told I have reflux and that i had many other health problems.

Any time you need to vent feel free to get in touch with me. I understand. I am trying to keep on the brave face.

I have not had the hard time that you have had. I hope all goes well with you. I will put you in my prayers.

LMedlin
Posts: 21
Joined: May 2003

Thanks. I do my I 131 on Monday May 26th. I am nowing off of my Cytomel and suffering the results. No energy, Leg cramps and so on.... I am still trying to work but only making it half a day.
I am sleeping all the time. I just cant seem to get any thing done.

I have been trying to find someone to talk to that knows what it is like. I hate this feeling of weakness.

Thank you so much for listening.

The radiologist says that I will have to be quaratined for two weeks. I will be in the hospital for 1 day on. He cant give me a definite time on that. The dose is going to be extremely high and then I get to do it again in 6 months.

They keep telling me if I was going to get cancer this is the best one to have but I just dont see it that way.

I hope you are doing better. Thanks for letting me vent.

r11658h
Posts: 4
Joined: Jan 2004

Dear LMedlin,

After a full thyroidectomy I am off of my Cytomel and have started the low iodine diet. It's only been two days and I already feel very tired. I am deathly afraid of the next step, radiation, etc. Please tell me what your experience has been, how the radiation treatments went, what you are on (med's) and/or what you are going through now. I would welcome the opportunity to vent about this. Please email me at nails2day@comcast.net. Look forward to hearing from you. Thanks so much.

LAF64's picture
LAF64
Posts: 20
Joined: Apr 2003

I had surgery in 1989 for a total thyroidectomy and had a recurrance last year and had the I-131 treatment as well. I also was amazed at the incredible advances in that short time - thank God for Thyrogen is right! Had the Pet/CT Scan that you are talking about which was awesome - showed 5 lymph nodes that were not picked up by the I-131 scan. Being treated at New York Hospital - Cornell - and they recommended the Pet/CT Scan. Amazing doctors, and amazing results. Keep me posted.

rdjc
Posts: 20
Joined: Apr 2002

I just had the thyrogen this week. What a relief not to have to stop my meds... I have to do the I-131 again. This will be the second time, but this time I know more. This time I am in control and I will decide when this will happen...Do we really have to have the second treatment? I keep feeling uncomfortable with all this radiation exposure. Has anyone refused the I-131 and just kept taking the meds as their only form of treatment? Please let me know.

LMedlin
Posts: 21
Joined: May 2003

I dont know what the Thyrogen is. Could someone please explain.

LAF64's picture
LAF64
Posts: 20
Joined: Apr 2003

Thyrogen is an injection which elevates your TSH levels. In the old days, they used to make thyroid patients go completely off their Synthroid and become hyperthyroid so that the I-131 radiodine treatment would go only to any remaining thyroid cells. Today, Thyrogen simulates the process so you stay on your meds, and you get two injections prior to the radiodine treatment. A much friendlier process. Ask your doctor if you need this type of treatment. It is expensive so not all places give them - but I went where they did. Good luck!

kristismiles
Posts: 1
Joined: Aug 2003

I don't know when you wrote this e-mail, but it intrigued me. I am 25, and I was diagnosed with papillary thyroid cancer in 1999. So, almost four years ago. Since, I have had a near total thyroidectamy, and four treatments of 131. I am actually scheduled for my fourth treatment on Wednesday, and i am so thankful that I can do it as an outpaient now. I hated being in the hospital for radiactive iodine. None of the nurses want to come into your room because they don't want the exposure, and the food sucks as well as the stench of the hospital. Anywyas.... They have found a cyst near my trachea now, and my thyroglobulin levels have increased to 5.6, so I guess there is still cancer activity. I am scared about my future. I am graduating from college in December, and I am in the happiest relationship with an awesome guy, but I always have cancer in the back of my mind--even during my happiest moments. My mom died of cancer when I was 14, and I have so many emotional scars from that event. I refuse to put my family through another episode of that. I have told myself time and time again, that I will only think positive, and that I will have faith. But, at times it is difficult because I am on my fourth treatment, and I am ready for this to be gone!!! So, you used actual lemons, or did you use lemon drops? Any other helpful hints to make it through the treatment? I would be thankful
Kristi in Cali!!!!!!!!!

LAF64's picture
LAF64
Posts: 20
Joined: Apr 2003

I had I131 treatment last year and was given the highest dosage allowed to go home. It was a bit difficult to be completely isolated from my family but much better than being in the hospital from what I hear. I didn't use any lemon drops, etc. for that dosage, but did drink a ton of water and urinated frequently. I hear that if you have a higher dosage, they recommend the lemon drops. You will be fine with this cancer. It is highly treatable and curable. People don't die from thyroid cancer if treated. If you need any other information, don't hesitate to email at lfornino@comcast.net.

cherrie
Posts: 38
Joined: Oct 2003

Hi I know it has been a couple of months since you wrote this message, but I just wanted you to know that I am 34 years old and I have been dealing with this cancer since I was 17. It's been 15 years and I had my third I3I in Feb of this year and I will tell you that it was 152 the strongest I ever got but now I feel ok. and I go back for checkup in Dic to leave my meds and then the scan. If you need anybody to talk to you can email me at caburtonpr@yahoo.com
Take care

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