Well its 4 months since my Thyroidectomy and 2 months since I had the Radioactive Iodine. Since then I have more or less recovered from the radio-iodine but still have a few symptoms to get over.
I still do not have working Parathyroid glands, they were transplanted back into my neck, but have not started working yet. I am still taking calcium and Vitamin D pills, and hoping they start work soon because I don't like the buzzing sensation I get in my hands, face and feet when my calcium dips. My blood calcium is always normal on my blood tests but I still get some symptoms. It was worse when I was on holiday in Samoa recently, probably because it was so hot and I was getting a bit dehydrated.
My TSH (Thyroid stimulating hormone) level is still way too high so I have had my thyroxine (Synthroid) medication increased. There are a limited number of options for Synthroid doses in NZ so I am on 100mcg 4 days a week and 150mcg 3 days per week. In a few weeks I hopefully will be feeling less tired, will be able to get control of my weight and will have a few less digestive problems.
Normal TSH is somewhere around 2, mine was 11 , 2 weeks ago, the Oncologist is hoping to get it down to 0.1. The low level is what is called a suppression level and thyroid cancer patients are kept at that level for up to 10 years. Thyroid stimulating hormone prompts the thyroid cells to grow so by keeping the level very low, hopefully any thyroid cancer cells don't grow.
A week ago I got the results of my whole body scan which was done a week after the Radio-iodine. There were no metastases showing anywhere in the body, and very little iodine collected in my neck which means the surgeon did a really good job of clearing out the cancer from the lymph nodes and around the blood vessels.
So things are looking really good and I don't have to see the oncologist till November when I will get some more blood tests to see whether anything has changed.
Please don't hesitate to ask questions if you are going through treatment or are newly diagnosed with thyroid cancer in New Zealand.
Regards
Clare
Showing posts with label New Zealand. Show all posts
Showing posts with label New Zealand. Show all posts
Monday, June 9, 2014
Tuesday, April 15, 2014
Side effects of radio-iodine
The iodine goes to the remnant thyroid cells, any cancer cells that have spread around your body and to a few places you don't want it to go to, including the salivary glands.
It's a week since I had the RAI and I have had a sore neck, sore ears, and I have felt generally fluey since about day 4. I thought this was just due to swelling around the site of the thyroid operation, and the remains of the thyroid cells. Yesterday I had a whole body scan in the nuclear medicine department and was told that there is still radioactive iodine sitting in my salivary glands and that I should chew gum to get them to empty out. The swelling under my jaw, is swelling of the salivary glands, when I sucked on some sour sweets, it felt much better.
I chewed so much gum I gave myself a headache and an upset stomach from all the sugar free sweetners. I tend to be a bit sensitive to Xylitol, Mannitol, Sorbitol. I'd much prefer to eat sugar, but now my mouth is feeling a bit dry, so I know I am at risk of having problems with tooth decay if my salivary glands don't recover.
So on day 9 after RAI, I have sore glands, and my mouth is a bit drier , particularly in the mornings and if I haven't drunk water for a while. I'm looking at resources on dealing with salivary gland issues. Here is information about salivary gland massage if that becomes necessary. http://www.sjogrens.org/files/brochures/Salivary_Glands_Massage.pdf
Other side effects were , feeling mildly nauseous for 3-4 days after the radio iodine dose. This was worse if I hadn't eaten for a long time, so was worse in the mornings before breakfast.
A very sore swollen neck, which is probably a good thing, as it means the radio iodine is doing its job and has collected in the area where the thyroid remnant cells are.
Many of the other symptoms of tiredness, digestive issues, dry eyes, absent minded ness, are symptoms of hypothyroidism, and should improve as my TSH level goes down and my thyroxine level goes up.
It's a week since I had the RAI and I have had a sore neck, sore ears, and I have felt generally fluey since about day 4. I thought this was just due to swelling around the site of the thyroid operation, and the remains of the thyroid cells. Yesterday I had a whole body scan in the nuclear medicine department and was told that there is still radioactive iodine sitting in my salivary glands and that I should chew gum to get them to empty out. The swelling under my jaw, is swelling of the salivary glands, when I sucked on some sour sweets, it felt much better.
I chewed so much gum I gave myself a headache and an upset stomach from all the sugar free sweetners. I tend to be a bit sensitive to Xylitol, Mannitol, Sorbitol. I'd much prefer to eat sugar, but now my mouth is feeling a bit dry, so I know I am at risk of having problems with tooth decay if my salivary glands don't recover.
So on day 9 after RAI, I have sore glands, and my mouth is a bit drier , particularly in the mornings and if I haven't drunk water for a while. I'm looking at resources on dealing with salivary gland issues. Here is information about salivary gland massage if that becomes necessary. http://www.sjogrens.org/files/brochures/Salivary_Glands_Massage.pdf
Other side effects were , feeling mildly nauseous for 3-4 days after the radio iodine dose. This was worse if I hadn't eaten for a long time, so was worse in the mornings before breakfast.
A very sore swollen neck, which is probably a good thing, as it means the radio iodine is doing its job and has collected in the area where the thyroid remnant cells are.
Many of the other symptoms of tiredness, digestive issues, dry eyes, absent minded ness, are symptoms of hypothyroidism, and should improve as my TSH level goes down and my thyroxine level goes up.
Monday, April 14, 2014
Radio active iodine
In order to kill off the remaining thyroid cells, I had radioactive iodine treatment. I was admitted to hospital for 2 days and only allowed out when my levels of radioactivity were low enough that it was safe to go home.
The room at the hospital has lead lined walls and an en suite bathroom. There is a TV (which needs a card which you can't leave to go and buy), you are pretty much on your own from the moment you take the radioactive iodine capsule. There is an ante-room where visitors cover their clothes in plastic aprons, gloves and paper overshoes. Nurses pass your food through the door on disposable plates, you take your own medication, no-one disturbs you to do 'obs' like blood pressure or pulse readings. Its all very peaceful and a chance to catch up on sleep or reading or watching videos.
I recommend you bring your cellphone, iPad and a portable DVD player and DVD's. To prevent contamination of the iPad and phone, you put them inside ziplock bags and they are taken out at the end to be tested to see if they are radioactive. If they are, they have to stay at the hospital in a special storeroom for 6 weeks, so it is worth using the bags. You can also use latex gloves when handling the DVD player to keep it clean.
If you want to bring clothes from home, bring your old tatty stuff that you can throw away. I was very cold and brought a horrible old sweater which had shrunk. I threw it in the rubbish bin at the end. I also threw away old undies and old threadbare pygamas. no-one will see you in the old clothes. Keep your good clothes separate for going home in. I was also asked to bring socks or old slippers and wear them all the time to prevent transferring radioactivity from my feet to the floor.
Before you take the capsule you are given anti nausea medication. When you take the capsule, you are asked not to eat or drink anything for 2 hours, then you can eat and it's better to continue the Low iodine diet if possible. Watch out for the bread, as the hospital just gives a low salt diet. Most meals at the hospital I was at, gave 2 slices of brown bread with every meal, even the one before I was given the radio-iodine. Shop bought or commercial bread in New Zealand has iodine added. The other thing I was given was red jelly, another no-no on the low iodine diet. I chucked it in the bin and ate the lunch I had brought from home.
You are asked to drink lots of water, and to eat sour lollies or chew gum. This helps the excess iodine leave your body via your urine. Some of the iodine goes to your salivary glands which can be damaged by the radioactivity so to keep that moving through, keep chewing and drinking lots. Shower frequently to wash the sweat off your skin.
I felt a bit nauseated, but some of that might have been from eating too many sugary or Xylitol lollies. Some of which I may never be able to face ever again!
The radiation physicist will come and measure the amount of radiation coming off you , and will tell you when you are safe to go home. Usually this is 48 hours later but can take longer if you have a higher dose. I went home after 48 hours and had to sit in the back seat as far away as possible from the driver and we went outside of rush hour to make it a quicker trip.
The room at the hospital has lead lined walls and an en suite bathroom. There is a TV (which needs a card which you can't leave to go and buy), you are pretty much on your own from the moment you take the radioactive iodine capsule. There is an ante-room where visitors cover their clothes in plastic aprons, gloves and paper overshoes. Nurses pass your food through the door on disposable plates, you take your own medication, no-one disturbs you to do 'obs' like blood pressure or pulse readings. Its all very peaceful and a chance to catch up on sleep or reading or watching videos.
I recommend you bring your cellphone, iPad and a portable DVD player and DVD's. To prevent contamination of the iPad and phone, you put them inside ziplock bags and they are taken out at the end to be tested to see if they are radioactive. If they are, they have to stay at the hospital in a special storeroom for 6 weeks, so it is worth using the bags. You can also use latex gloves when handling the DVD player to keep it clean.
If you want to bring clothes from home, bring your old tatty stuff that you can throw away. I was very cold and brought a horrible old sweater which had shrunk. I threw it in the rubbish bin at the end. I also threw away old undies and old threadbare pygamas. no-one will see you in the old clothes. Keep your good clothes separate for going home in. I was also asked to bring socks or old slippers and wear them all the time to prevent transferring radioactivity from my feet to the floor.
 |
| The Radio-iodine capsule is brought to the room in a lead lined trolley called a Porta-Pig |
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| The room is cleaned afterwards with a special spray (who knew this was possible!) |
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| Washing machine soap? |
You are asked to drink lots of water, and to eat sour lollies or chew gum. This helps the excess iodine leave your body via your urine. Some of the iodine goes to your salivary glands which can be damaged by the radioactivity so to keep that moving through, keep chewing and drinking lots. Shower frequently to wash the sweat off your skin.
I felt a bit nauseated, but some of that might have been from eating too many sugary or Xylitol lollies. Some of which I may never be able to face ever again!
The radiation physicist will come and measure the amount of radiation coming off you , and will tell you when you are safe to go home. Usually this is 48 hours later but can take longer if you have a higher dose. I went home after 48 hours and had to sit in the back seat as far away as possible from the driver and we went outside of rush hour to make it a quicker trip.
Friday, April 11, 2014
Diagnosis
When you are diagnosed with any cancer, you go into shock, but thyroid cancer can sometimes be very uncertain. A fine needle biopsy can show abnormal cells but it is often not completely clear that you have cancer until the surgeon gets inside your neck. I think I was hoping that the abnormal cells would be something else, but the large calcified lymph nodes were a pretty good clue for the medical staff that were dealing with my case and I was advised to have a full thyroidectomy and modified left neck dissection. I have private insurance but my surgeon found a cancellation in the public hospital which needed to be filled, and slotted me in.
In February 2014, I had my thyroid removed along with 18 lymph nodes. The pathology came back about 3-4 weeks later and was positive for Papillary Thyroid Carcinoma. Six lymph nodes were also positive with several that were over 1 cm in size. The largest tumor on my thyroid was 4cm but very little of my thyroid was normal, the one quarter without tumor in it, had signs of Hashimotos thyroiditis which was undiagnosed and may explain why I had problems with losing weight and other signs of hypothyroidism before the surgery (even though my blood test results were always within normal range).
The morning after surgery I started to take Thyroxine to replace the hormone that would normally be provided by the thyroid gland. I was also put on Calcium tablets and Vitamin D to regulate my calcium levels, as my Parathyroid glands had been removed and two had been transplanted back into my neck muscle. As I write this, it is 9 weeks later and my parathyroid glands are starting to work again so I have been able to reduce some of the calcium that I take.
At the beginning of this week , which was 9 weeks since surgery I was given a dose of radioactive iodine to kill off all the left-over thyroid cells and cancer cells. I intend to write more about the preparation , the low iodine diet and the radioactive iodine treatment in the next post.
In February 2014, I had my thyroid removed along with 18 lymph nodes. The pathology came back about 3-4 weeks later and was positive for Papillary Thyroid Carcinoma. Six lymph nodes were also positive with several that were over 1 cm in size. The largest tumor on my thyroid was 4cm but very little of my thyroid was normal, the one quarter without tumor in it, had signs of Hashimotos thyroiditis which was undiagnosed and may explain why I had problems with losing weight and other signs of hypothyroidism before the surgery (even though my blood test results were always within normal range).
The morning after surgery I started to take Thyroxine to replace the hormone that would normally be provided by the thyroid gland. I was also put on Calcium tablets and Vitamin D to regulate my calcium levels, as my Parathyroid glands had been removed and two had been transplanted back into my neck muscle. As I write this, it is 9 weeks later and my parathyroid glands are starting to work again so I have been able to reduce some of the calcium that I take.
At the beginning of this week , which was 9 weeks since surgery I was given a dose of radioactive iodine to kill off all the left-over thyroid cells and cancer cells. I intend to write more about the preparation , the low iodine diet and the radioactive iodine treatment in the next post.
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