In April of 2013 I returned to Basel for my final treatment. This would be LU177 again and as in February, all went extremely well. It was by far the easiest treatment with mild symptoms of nausea, and feeling tired for a few months.
In July of 2013 my daughter and I took a trip to Nashville to see Dr. Liu and have a GA68 scan which would be a baseline to be able to compare the growth or stability of the tumors in the future. This scan is much more sensitive and revealed mets to bone and brain. More advanced than we had thought since the Octreoscan did not show these tiny tumors. At this point we would wait to see what effect the PRRT had on the tumors, since it is a systemic treatment.
I continued to feel well and not overly tired, but I did need naps and was never able to get myself up to working a full time schedule, as I had hoped. In fact, although I felt a new surge of energy and was able to bike, and take walks, something I hadn't been able to do before treatment, I still noticed when I got tired, I got tired. I needed my naps. Emotionally, I have to say the news of such widespread disease took a toll on me, but I talked myself back into fight mode. I needed to live, really live my life. The diagnosis was again, a gift, not a burden. I had to consider leaving my job, in order to take care of my health and healing, both physical and emotional. I tossed these thoughts back and forth for months before I actually decided it was time to leave my job in July of 2014.
Monday, November 10, 2014
Saturday, February 9, 2013
DAY 3 OF ROUND 2 PRRT TREATMENT IN BASEL
Day three is exciting. I will be receiving a scan that will show how well the radiation took to the tumors. We do not have a comparison scan yet for these tumors, as this is the first of LU177, therefore we cannot judge any changes in the tumors. In April, my third and last of treatments for this round, will be able to give us an indication. True results may take many months and I will go for a special GA68 scan, in September or October, available at Vanderbilt University in Nashville, y'all.
At 11:00 my buddy Pierre comes in to retrieve me for my scan. As he guides me down the hall to the elevator, I remember this time to keep my distance. A good six feet and try not to cross in front of people as it is not good for them to walk in the radioactive path I create. I'm a little bomb.
Down in the scan room I undergo forty five minutes of scans. No contrast dye is needed as the radiation lights up the image. Quite nice, not to have to have an IV injection, this is a piece of cake.
The scan is complete and Pierre takes me back to my room, where my lunch of pasta and potatoes in a cheese sauce, salad with fruit and walnut poppy seed cake await. Actually not bad, as far as hospital food goes, this picky girl is happy.
At two o'clock my hunky hubby arrives with a nice croissant, and he takes his seat behind the iron wall. If I am on the bed and he is in the chair, we can't see each other. Those of you who know my husband well, will laugh at this, because, well, it is so Adrian. Not to be left out he gets up and adjusts the mirror on the medicine cabinet at just such an angle. We can now see each others' eyes. But wait he has rubbed off on me over the years. I hit the button on the bed and it rises four inches until we can see each other. Oh, love.
At six o'clock, Professor Wild and Dr. Kaul arrive with news of the scan. The uptake of radiation was very good again. It also showed there were more than one tiny tumor in my left breast and two seen on the right, which we hadn't know about yet. There is also a tumor on the right thigh. The good news is they are small and the radiation was drawn to them. The radiation will keep them small and they are really only a problem if they grow large. It was good that I came for this treatment now. If the disease is left untreated and tumors grow large the success of treating them is less. The mindset in the United States is to wait until later in the course of disease to use the PRRT treatment. I hope as this treatment, is now in studies around the United States, that this myth will be corrected as the research guides them to a fuller understanding.
Well, good night. Tomorrow I will return to the apartment to finish decontamination, before I board the plane home on Valentines Day.
At 11:00 my buddy Pierre comes in to retrieve me for my scan. As he guides me down the hall to the elevator, I remember this time to keep my distance. A good six feet and try not to cross in front of people as it is not good for them to walk in the radioactive path I create. I'm a little bomb.
Down in the scan room I undergo forty five minutes of scans. No contrast dye is needed as the radiation lights up the image. Quite nice, not to have to have an IV injection, this is a piece of cake.
The scan is complete and Pierre takes me back to my room, where my lunch of pasta and potatoes in a cheese sauce, salad with fruit and walnut poppy seed cake await. Actually not bad, as far as hospital food goes, this picky girl is happy.
At two o'clock my hunky hubby arrives with a nice croissant, and he takes his seat behind the iron wall. If I am on the bed and he is in the chair, we can't see each other. Those of you who know my husband well, will laugh at this, because, well, it is so Adrian. Not to be left out he gets up and adjusts the mirror on the medicine cabinet at just such an angle. We can now see each others' eyes. But wait he has rubbed off on me over the years. I hit the button on the bed and it rises four inches until we can see each other. Oh, love.
At six o'clock, Professor Wild and Dr. Kaul arrive with news of the scan. The uptake of radiation was very good again. It also showed there were more than one tiny tumor in my left breast and two seen on the right, which we hadn't know about yet. There is also a tumor on the right thigh. The good news is they are small and the radiation was drawn to them. The radiation will keep them small and they are really only a problem if they grow large. It was good that I came for this treatment now. If the disease is left untreated and tumors grow large the success of treating them is less. The mindset in the United States is to wait until later in the course of disease to use the PRRT treatment. I hope as this treatment, is now in studies around the United States, that this myth will be corrected as the research guides them to a fuller understanding.
Well, good night. Tomorrow I will return to the apartment to finish decontamination, before I board the plane home on Valentines Day.
Thursday, February 7, 2013
Day 2 OF ROUND 2 FOR LU177 PRRT TREATMENT
In November, I was treated with the radioactive peptide, Y90. Today I will receive a different peptide called LU177. While both types will have an effect on all tumors, the Y90 is the better treatment for the larger tumors and LU177 is more effective on smaller tumors. This is the reason the doctors here, through their research, have found this to be the best option for treatment with the optimum results.
Currently, in the United States, if you are lucky enough to be admitted into a study or into the facility in Houston, that started providing PRRT treatment in November 2011, you would only be receiving LU177. It would not matter if you have different size tumors. This is all the United States is able to provide at this time. I am so grateful for all the help, support and love I received to be allowed to have the choice to be treated in Basel, Switzerland under Dr. Wild. I am grateful that all my tumors will be treated properly.
All is going very well since we checked back into the Hospital at 8 AM this morning.
Pierre greets us after we arrive and settle into the room, which by the way is a lovely private room. How that happened, who knows but I am not complaining. Happy. Happy. Happy.
I set up my laptop, plop my magazines all around my bed, and check my stash of Swiss Chocolates into the closet. A girl has got to be comfortable, after all. Agreed?
Soon after, Dr. Kaul, Professor Wild's assistant, came into the room to put in the special IV for treatment. (As I was fumbling with my chocolate in the closet, I might add. OK guilty, with a red face, hopefully he thinks I am just flushing.)
First I am started on an IV drip with medicine to protect my kidneys from any harmful effects of the radiation treatment.
Next, I am given a dosage of three steroid pills, along with a pill to protect my stomach, as steroids can be harsh. I also receive an anti nausea pill that melts under my tongue.
I am now prepared and the clock has begun. I will be brought to the treatment room an hour from the time the IV drip is started.
An hour later, oh the Swiss are so punctual, my cheery buddy Pierre breezes in the room with his ear to ear smile. He leads me and my loving hubby down stairs to the treatment room.
This is where my writing a blog gets so exciting, what a pay off, I feel like a star. Silly me.
As I sit waiting with my husband, the door opens and an obviously American man is coming out of the treatment room.
Let me explain myself. There is a sixth sense that develops once you are in a foreign country, that does not speak your language, have signs in your language, have television in your language, menus in your language, trolley stops in your language, grocery stores in your language, who knows what I have been eating, ect. Simply put, you recognize your own.
All the Doctors and nurses in the hospital, not only speak English well, but several other languages also. In the city, you will find many understand and speak some English. We are staying in a little town outside of the city. A nice little two bedroom apartment with a kitchen, and it is cheaper than any hotel. We also can cook our meals, which is great because all restaurants in Basel are very expensive. I'm afraid though, we may just be the only two English speakers in the town. :) haha
Coming from the States where so many languages are spoken, the shoe is definitely on the other foot.
As this man sees us, I am thinking, that he also recognizes us as American. At the same moment, his hand reaches out to me and he has a big smile, " Hi Donna, I am Jim O'Donnell, I am from New Jersey, and read your blog, I feel like I know you, so nice to meet you." he says.
"Jim, nice to meet you", I shake his hand and introduce my husband Adrian. My nurse Kerstin had told me when I arrived yesterday, that a patient named, Jim O'Donnell, knows me and wanted to say hi. I couldn't place his name and assumed he was from the email support group, carcinoid@listserve.acor.org. I put a post on the site that night, that I would love to meet him, it is exciting when someone from back home is being treated here at the same time. There was no response, and that was because he knew me from my blog.
My Blog, people. Oh yes, for a split second the little me in my head did the whoopee dance singing, " I'm famous, famous, famous I am".
Ok, just joking, no really I am. Hey, I take a stab at being funny sometimes. :)
Thank you Jim for giving me the greatest compliment. To learn that when you write down your heartfelt words during a difficult time in life and then your words reach others, that you never would have met, who understand what you are saying, and need the comfort is humbling. A gift is given to me, a gift beyond compare, if someone in the same position, has learned to advocate for themselves or a loved one, due to my story and the stories of others with links on this blog. I know that is how I learned. These sites and blogs taught me knowledge, and gave me support, comfort, and strength during dark hours. I have a wonderful supporting family, I am so lucky. However, there is a need to also be able to reach out to others that are traveling the same road as you. I think of these blogs and support groups, email groups and patient conferences and Doctors that give their precious time to answer questions on email sites, as an interlocking circle. I am glad my story and my blog is reaching and holding a spot in that circle.
So a Big, Warm, Welcoming, in English "Hellooooooo" to you Jim O'Donnell, and I messaged Maureen Coleman, from Canada, who sends you also a warm hello, and remembers a wonderful conversation she had with you at a CNETS Conference in Toronto, in 2008. She wishes you well.
In the mist of this introduction, it is my time to go into the treatment room that Jim has just left, and things are punctual here.
This set up is different. The Y90 was administered though an iron box and the Dr. pushed it through the IV via a long cord from the other side of the room, they also wore protective gear.
Dr. Kaul, flushes my IV with saline, and all is working well, he then proceeds to do what I thought was flush the IV, one more time. He asks me if I feel all right, any nausea, pain, shortness of breath or dizziness. No, there are no symptoms and that was not a flush. That was the LU177. I sit for about ten minutes and then, my cheery, smiling, Pierre arrives to escort my husband and me back to the room. I need to remain six feet behind them and enter the special elevator last. He constantly needs to remind me. I feel like such a ding ding. Remember to keep your distance I tell myself, and mess up anyway. I feel fine, so I keep forgetting.
Back in the room my husband is banished for four hours, and I remain on the IV medication to help flush and protect my kidneys. I will also need to continue lots of litres of water over the next several days around the clock. I need my kidneys, so glad to oblige.
My husband returns after site seeing in Basel, using the wonderful trolley system and walking the beautiful cobble stone roads. Honey buns stays behind his iron wall of protection and can stay two hours. He is tired and bearing gifts of chicken mcnuggets, in case my food doesn't match the description, I am happy to see the greasy little nuggets. I do not eat at McD's back home, but sometimes something familiar is just nice and comforting. They hit the spot, along with my hospital salad and fruit dessert.
Let's see what tomorrow brings, shall we? Good Night all.
Wednesday, February 6, 2013
LU177 PRRT TREATMENT/ BASEL
In Switzerland you receive an invitation for treatment and hospital stay. My invitation was for February 6th, between 2 - 3 PM.
My husband and I arrived at the hospital at 2 PM and went to the 4th floor. We were then buzzed into the closed ward by Pierre, one of three friendly nurses, assigned to the PRRT patients.
By luck of the draw, I received a private room, a big bonus. Then Pierre had me fill out the food menu for the next three days. Kerstin came in to take blood work and my vitals, and told me after the Doctor spoke to me, I would be able to go back to my apartment for the night, as the procedure would be done tomorrow morning.
So stay tuned, I will have more to chat about tomorrow.
My husband and I arrived at the hospital at 2 PM and went to the 4th floor. We were then buzzed into the closed ward by Pierre, one of three friendly nurses, assigned to the PRRT patients.
By luck of the draw, I received a private room, a big bonus. Then Pierre had me fill out the food menu for the next three days. Kerstin came in to take blood work and my vitals, and told me after the Doctor spoke to me, I would be able to go back to my apartment for the night, as the procedure would be done tomorrow morning.
So stay tuned, I will have more to chat about tomorrow.
Tuesday, February 5, 2013
BACK TO BASEL FOR ROUND 2 OF PRRT
Tomorrow on February 6th, I will receive a second round of PRRT treatment. This will be different from the first because I will be given a different radioactive peptide, LU177 instead of Y90.
It has taken all of the 11 weeks in between treatments to feel myself again, whatever that may be. Not quite normal but able to function. Tired with a capital "T" is what was the most debilitating symptom for me. I do not actually think "tired" covers it. Too tired to think, to eat, watch TV, read, laugh, walk, read, a feeling of total uselessness. On the other hand, no surgery to recover from, no scars, no painful laughter. All in all, one of the easiest treatments I have had, and I believe very successful.
Why do I think it was successful? Your body talks to you. My noid tumors are saying, "what the HECK was that? ! ", and my body is saying, " Yeah ! baby ! take that ! WOO HOO.
Until tomorrow, good night friends. (stolen from Nancy Grace)
It has taken all of the 11 weeks in between treatments to feel myself again, whatever that may be. Not quite normal but able to function. Tired with a capital "T" is what was the most debilitating symptom for me. I do not actually think "tired" covers it. Too tired to think, to eat, watch TV, read, laugh, walk, read, a feeling of total uselessness. On the other hand, no surgery to recover from, no scars, no painful laughter. All in all, one of the easiest treatments I have had, and I believe very successful.
Why do I think it was successful? Your body talks to you. My noid tumors are saying, "what the HECK was that? ! ", and my body is saying, " Yeah ! baby ! take that ! WOO HOO.
Until tomorrow, good night friends. (stolen from Nancy Grace)
Saturday, November 24, 2012
DAY 4, 5, 6 OF PRRT TREATMENT
Well, I had to post these days together, as they just merged into one blah, nauseating blur for me. Just when I was on top of the world and feeling great, the rug was pulled right out from under me. So this is what my Doctor meant, by the steroids would alleviate the pain and nausea. They worked. So well, that I didn't realize I would be needing more for next few days. I just thought, I was wonder woman. Some lessons are hard learned. I will be prepared for the next round in February.
I didn't wake up until 11:00am on Thanksgiving. So much for an early Chicken dinner and ride through the German countryside. My husband had cooked dinner and I ate, but I was tired and went to take a nap that I didn't wake up from until 8:00, or so. I started feeling slightly nauseous, and was glad I had eaten earlier to keep my strength up. I tried to force down fluids and stay in bed. I was feeling nauseous, tired and fidgety, and whiny, I am a BABY when it comes to nausea.
Yucky Thursday turned into icky Friday, whine, whine. My biggest concern was that I would still feel this way when I had to board the plane at 7am Monday. We would have to be up by 4am and out the door, I couldn't imagine being able to do that.
Early Friday evening, the nausea started easing up, and I took advantage of it by getting some sleep.
As my eyes opened up to an early Saturday morning in Basel, Switzerland, I became aware that the nausea was gone but I felt like I had been hit by a bus. No problem, I rolled over and got a couple hours more of sleep.
Mid morning I was able to check out facebook, and eat some cornflakes. Saturday was looking good for me. I have a very heavy, headed feeling, and I am tired, but no nausea, thank goodness.
Later in the day, we took the fifteen minute drive over the border to France, and picked up the best pizza I have ever eaten. One more day of rest and then we come home.
I didn't wake up until 11:00am on Thanksgiving. So much for an early Chicken dinner and ride through the German countryside. My husband had cooked dinner and I ate, but I was tired and went to take a nap that I didn't wake up from until 8:00, or so. I started feeling slightly nauseous, and was glad I had eaten earlier to keep my strength up. I tried to force down fluids and stay in bed. I was feeling nauseous, tired and fidgety, and whiny, I am a BABY when it comes to nausea.
Yucky Thursday turned into icky Friday, whine, whine. My biggest concern was that I would still feel this way when I had to board the plane at 7am Monday. We would have to be up by 4am and out the door, I couldn't imagine being able to do that.
Early Friday evening, the nausea started easing up, and I took advantage of it by getting some sleep.
As my eyes opened up to an early Saturday morning in Basel, Switzerland, I became aware that the nausea was gone but I felt like I had been hit by a bus. No problem, I rolled over and got a couple hours more of sleep.
Mid morning I was able to check out facebook, and eat some cornflakes. Saturday was looking good for me. I have a very heavy, headed feeling, and I am tired, but no nausea, thank goodness.
Later in the day, we took the fifteen minute drive over the border to France, and picked up the best pizza I have ever eaten. One more day of rest and then we come home.
Wednesday, November 21, 2012
DAY 3 OF PRRT TREATMENT BASEL, SWITZERLAND
I was looking forward to a good night sleep last night, and ready to leave the hospital for the apartment today, but life is unpredictable. I'm fine, the sleep didn't really happen for me though. My poor roommate, who has pancreatic cancer, not carcinoid, also suffers from extreme diabetes since having surgery on her tumor. Her sugar levels will plummet rapidly without warning, putting her at risk for coma. The doctors in her hometown of Strasbourg, France, are having a hard time finding the perfect balance of insulin and sugar, to keep her levels steady. She arrived for her PRRT treatment in rough shape. She required nightly 2 hour sugar checks, and it was usually very low, which meant she had to eat sugar cubes, jam and crackers with orange juice. Who could put up with that nightly? I felt so sorry for her. She breathed very heavily. When your system is out of whack, it effects how the whole body works.
She normally snored, loudly, but last night was different. Around 12:30, she started talking in her sleep and thrashing around, I thought she was having a nightmare. I tried to roll over and sleep. Then she seemed to be having a hard time breathing, and she was now whining, more than talking. I rang the buzzer for the nurse, who wasn't due to check on her for another half hour.
He came right in, and recognized that she was in danger of going into coma. I felt so bad that I hadn't called him in sooner. He put a sugar cube in her mouth and she was not chewing it, so he ran out and got a new IV bag, that must have been more potent. When he left, she cried reaching out to him as he ran out of the doorway. So I jumped out of bed and went to her side, and rubbed her arm, and told her she would be ok. Not sure that she understood, she seemed to be looking through me. When the nurse returned, I went for a cold cloth for her head. We both rubbed her arms, and told her she would be ok, he in French, and me in English. Then he looked at me and said, "you speak English ?" and I said, "you speak English ?" and we laughed.
Lillian took about ten minutes to come around. She was exhausted from the experience and had no memory of what happened. But she was so grateful that we were there. The nurse made her comfortable, I went to bed, but didn't take my eyes off her for an hour.
The morning came fast, and I jumped in the shower, and came out to a delivered breakfast waiting for me. When the morning nurse came in, I asked when he thought I would be able to be dismissed. "Well," "he said," "you can leave whenever you are ready, I will have your paperwork sent to you and your doctors. "
Love it ! I called my husband, he came in ten minutes and picked me up. We grabbed a few groceries at the COOP, while I was careful to stay three meters away from children and women. The COOP's (pronounced Cope) are everywhere, with the largest ones like a less expensive Wholefoods.
Tomorrow, I will make my chicken Thanksgiving Dinner, the Turkeys were $50 swiss francs, so no thanks. Then we are going for a ride through the German Country side an hour away. The weather here is so nice. I hope everyone has as wonderful, and as thankful a Thanksgiving, as I am having.
Love to all. XOXOX
She normally snored, loudly, but last night was different. Around 12:30, she started talking in her sleep and thrashing around, I thought she was having a nightmare. I tried to roll over and sleep. Then she seemed to be having a hard time breathing, and she was now whining, more than talking. I rang the buzzer for the nurse, who wasn't due to check on her for another half hour.
He came right in, and recognized that she was in danger of going into coma. I felt so bad that I hadn't called him in sooner. He put a sugar cube in her mouth and she was not chewing it, so he ran out and got a new IV bag, that must have been more potent. When he left, she cried reaching out to him as he ran out of the doorway. So I jumped out of bed and went to her side, and rubbed her arm, and told her she would be ok. Not sure that she understood, she seemed to be looking through me. When the nurse returned, I went for a cold cloth for her head. We both rubbed her arms, and told her she would be ok, he in French, and me in English. Then he looked at me and said, "you speak English ?" and I said, "you speak English ?" and we laughed.
Lillian took about ten minutes to come around. She was exhausted from the experience and had no memory of what happened. But she was so grateful that we were there. The nurse made her comfortable, I went to bed, but didn't take my eyes off her for an hour.
The morning came fast, and I jumped in the shower, and came out to a delivered breakfast waiting for me. When the morning nurse came in, I asked when he thought I would be able to be dismissed. "Well," "he said," "you can leave whenever you are ready, I will have your paperwork sent to you and your doctors. "
Love it ! I called my husband, he came in ten minutes and picked me up. We grabbed a few groceries at the COOP, while I was careful to stay three meters away from children and women. The COOP's (pronounced Cope) are everywhere, with the largest ones like a less expensive Wholefoods.
Tomorrow, I will make my chicken Thanksgiving Dinner, the Turkeys were $50 swiss francs, so no thanks. Then we are going for a ride through the German Country side an hour away. The weather here is so nice. I hope everyone has as wonderful, and as thankful a Thanksgiving, as I am having.
Love to all. XOXOX
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