Therapy, treatment, normally implies some sort of relief right? Well let’s hope so, because I don’t think it sounds very therapeutic, but what do I know… 😂
Today is the day!
Its 6:41am and I’m about to go have a fight with the shower, be assaulted by my tumors for a good hour, and then once all at calms down… Think about leaving for the hospital for admissions, yesssss honey! It’s a glamarous life 😜
‘Mibg’ radioactive therapy should start to be administered around noon.. I have no idea what to expect… We are anticipating my body to not cooperating during the injection, it’s just a fact that the tumors are going to uptake the radioactive isotopes, and they’re going to essentially explode their adrenaline, leavin me littered with the aftermath, this is the part where they have to be extremely careful to balance with medications to protect my heart and so on! Yikes 😬
I got the greatest gift of all yesterday, because of the kindness and generosity of so many … Serge is able to stay 10 minutes away while these complications arise, being right there, VS being 3.5 hours away.. He is literally my husband and yet my caregiver, and it’s hard enough being isolated during this whole event, and several days after, knowing he is there if something goes wrong… is the best gift anyone could have given me.
Yesterday was one of the most difficult days of my life, but my heart was full of warmth and happiness because of every single one of you reaching out to me… Today you will be with me in my heart 💖 Getting me through each step, until I can update again! We love you all so very much, merci and thank you for your continued support in my journey 🏩
I must be off for now, tata my loves!
See you after I’m radioactive and a little less pleasant … 😈💖
Pheo VS Fabulous
😘😘 There will be no sandwiches today, k?? Lots of pheo ass kicking though!! DON’T EVEN MESS WITH MIRANDA!!
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Just ice cream and smooth sailing … Well, granola and oatmeal 😂💖 love you
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I will be thinking of you today! Go blast those buggers radioactive girl!!!
My son Logan was diagnosed with a Stage IV, metastatic paraganglioma at age 15. They originally called his tumor a pheochromocytoma. They discovered a lesion in his pelvis at the same time they discovered the tumor on his adrenal gland. Logan, his mother, and her mother have the SDHB mutation. Up until now they have been treating bone lesions with interventional radiology. One close to his spinal column was treated with protons. Surprisingly protons did not kill this tumor.
Logan is 19 now and a PET scan last week revealed too many lesions. He goes in for his third MIBG scan next week to ensure his tumors still absorb MIBG. High dose MIBG is next.
Logan is lucky. His tumors don’t secrete hormones and they don’t cause him any pain.
Thank you so much for sharing your experience. Detailed information is very helpful in preparing for what is to come and knowing the type of questions to ask.
I hope you are out of the hospital by now and recovering at home. Being radioactive for a while must have been a surreal experience.
Hi Steve 👋🏼, First off .. Thank you for sharing Logan’s story with me. The reason why I do this is not only to spread awareness which will benefit NET cancer patients like myself and Logan, but also to connect and hopefully help other people sharing similar battles to mine.. So it means everything to me when people like yourself reach out and share something so personal. I’m so sorry to hear that Logan’s radiation treatments did not kill the tumor, unfortunately in most cases that’s why surgery is often preferred as the first method, and when it can’t be done or when it’s too extensive to be removed (like mets) … They opt to do other treatments to try and manage it. I am still incredibly fresh from MIBG and although it is too soon to tell anything and it’s been quite a tough treatment for me (very individual and made difficult with my adrenal insufficiency and very very active tumors) …. It really is the most sought after treatment for this disease I would say – if he is MIBG positive, that is such a blessing. I’ve heard many good things from so many others, I will certainly be posting more of my experience as I go as always.. I’ve just gotten home and I’m still quite radioactive and exhausted so I’ve not yet had the chance to share – I imagine his experience will be much less eventful as his tumors are silent and much less obnoxious ☺️😜 Thank god! ANYTIME I can be of any help to any of you as far as questions … it’s a pleasure, I can certainly try and help from my experiences.
Thank you for taking time to respond.
So glad you are home.
We are off the the hospital to pick up PKK to protect his thyroid. You are probably taking it too.
Get plenty of rest. Looking forward to hearing how this treatment worked for you.
Oh, do you know the potency of the MIBG dose you recieved? I am not sure of the units.
Yes, 26 days worth of potassium perchlorate 😳 (Yuck) resting is all I’m able to do for now… I am trying to be kind to myself and have a lot of patience, time is everything. When is he receiving the high dose therapy? I received 300millicuries, I also did a bone marrow stem cell transplant before (stored my own stem cells) to ensure that if the high dose therapies were to deplete my bone marrow … They would have mine on hand ready to transplant back to me. Has a hematologist become involved and discussed any of this with you? It may not be a bad thing to bring up, especially since MIBG normally is not done just once, it’s done just as a preventative measure in most cases, but a very good precaution I’d say..
The dose potency at 300 is very high but it can go higher… The nuclear medicine team preferred not to go any higher than this to prevent further damage being done. Often it’s done much lower as well, in the 100s-200s, it depends on the case of course and how often they anticipate doing it I suppose.
No time set for the high dose MIBG. I remember hearing a dose of 200 since they may want to do it again in the future (SDHB mutation). We have not been told they plan to do bone marrow stem cell storage. I suspect it is part of the regime. All through Logan’s treatment we get pulled into talk with surgeons, endocrinologists, nuclear medicine, laser surgeons. They seem to have meetings to discuss options and often come up with new ideas, new plans, new people to see. Logan is lucky, he gets all of his treatments at Seattle Children’s Hospital. I think he has had every kind of imaging. Ultrasound, CT, PET, MIBG, and an MRI. They take a lot of extra steps to ensure his comfort. Double checking for blood tests needed so they don’t need to poke him again. Anti-anxiety medication.