Bonni, what size did Brittany's spinal met grow to before it was properly diagnosed? I'm pretty sure that any ASPS patient who's had the disease long enough has suffered one or two solid attempts by radiologists to end our lives prematurely.
Ivan rocking it since 2003
Re: Ivan rocking it since 2003
So... Dr. Littrup had a cancellation this Tuesday, and I'll be flying to Detroit. I was initially given August 30th as the earliest date, so this is fortunate. Sure, we didn't even get a chance to speak or hear from our local doctors, but no matter. My philosophy is that this crap needs to be gone not in 3 days, but 3 months ago
Bonni, what size did Brittany's spinal met grow to before it was properly diagnosed? I'm pretty sure that any ASPS patient who's had the disease long enough has suffered one or two solid attempts by radiologists to end our lives prematurely.
Bonni, what size did Brittany's spinal met grow to before it was properly diagnosed? I'm pretty sure that any ASPS patient who's had the disease long enough has suffered one or two solid attempts by radiologists to end our lives prematurely.
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Ivan rocking it since 2003
Hi Ivan,
This is wonderful news that you were able to obtain an appointment with Dr. Littrup so quickly
, and I am so grateful that you will be able to have your adrenal mets ablated by him without having to wait for appointments and treatment scheduling with your local doctors which could waste precious time.
In response to your question about Brittany's spinal met, it had grown to be about 5 cm. by 3 cm. after being inexcusably, inexplicably, and irresponsibly "missed..." in her three previous CT scans by both the radiologist and the interim oncologist (who was really worthless and very negligent!!) before it became symptomatic and was FINALLY!! diagnosed in an emergency scan resulting in two very dangerous and debilitating emegency spinal resections.
Unfortunately, we, you, and many others have learned the hard way that doctors and radiologists sometimes and too often can, and do, make very serious and dangerous mistakes so the burden is on us as patients and family members to be as pro-active and knowledgeable as possible to ensure that any mistakes that are made are immediately recognized, addressed, and resolved.
My most positive thoughts and very best wishes will be traveling with you to Detroit, and my greatest Hope will be with you for a very successful outcome to your Cryo procedure and a very good and speedy recovery. Please tell Dr. Littrup and his staff "HELLO" from us Hesses.
I will be anxiously awaiting your post-Cryo update, and holding you very close in my heart and most special thoughts.
With special hugs, deepest caring, healing wishes, and continued Hope,
Bonni
This is wonderful news that you were able to obtain an appointment with Dr. Littrup so quickly
, and I am so grateful that you will be able to have your adrenal mets ablated by him without having to wait for appointments and treatment scheduling with your local doctors which could waste precious time. In response to your question about Brittany's spinal met, it had grown to be about 5 cm. by 3 cm. after being inexcusably, inexplicably, and irresponsibly "missed..." in her three previous CT scans by both the radiologist and the interim oncologist (who was really worthless and very negligent!!) before it became symptomatic and was FINALLY!! diagnosed in an emergency scan resulting in two very dangerous and debilitating emegency spinal resections.
Unfortunately, we, you, and many others have learned the hard way that doctors and radiologists sometimes and too often can, and do, make very serious and dangerous mistakes so the burden is on us as patients and family members to be as pro-active and knowledgeable as possible to ensure that any mistakes that are made are immediately recognized, addressed, and resolved.
My most positive thoughts and very best wishes will be traveling with you to Detroit, and my greatest Hope will be with you for a very successful outcome to your Cryo procedure and a very good and speedy recovery. Please tell Dr. Littrup and his staff "HELLO
" from us Hesses.I will be anxiously awaiting your post-Cryo update, and holding you very close in my heart and most special thoughts.
With special hugs, deepest caring, healing wishes, and continued Hope,
Bonni
Re: Ivan rocking it since 2003
Bonni, did Brittany's disease became more widely disseminated almost immediately after the large spinal tumor? If my progression was related to the large met, it would be around 12 months after it reached a size of around 2+ cm.
Re: Ivan rocking it since 2003
Ivan,
Glad to hear you've been moving on so quickly. Good luck with the ablation.
Glad to hear you've been moving on so quickly. Good luck with the ablation.
Ivan wrote:So... Dr. Littrup had a cancellation this Tuesday, and I'll be flying to Detroit. I was initially given August 30th as the earliest date, so this is fortunate. Sure, we didn't even get a chance to speak or hear from our local doctors, but no matter. My philosophy is that this crap needs to be gone not in 3 days, but 3 months ago
Bonni, what size did Brittany's spinal met grow to before it was properly diagnosed? I'm pretty sure that any ASPS patient who's had the disease long enough has suffered one or two solid attempts by radiologists to end our lives prematurely.
-
cachabamba10
- New Member
- Posts: 79
- Joined: Wed Sep 23, 2009 3:20 pm
- Location: Fort Smith, Arkansas USA
Re: Ivan rocking it since 2003
Ivan I hope your ablation treatment goes well and you are able to get back to your usual lifestyle as soon as possible.
Take care guy
Mario
Take care guy
Mario
Re: Ivan rocking it since 2003
Thanks for your update and very glad you are able to receive treatment tomorrow. Best wishes.
Re: Ivan rocking it since 2003
I'm at the hospital, the IV's are in the arm. Procedure is in one hour. Should be outpatient if everything goes as planned.
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Ivan rocking it since 2003
Dear Ivan,
I just got on the computer and read your thoughtful update regarding being all prepped and ready for the Cryoablation. Hopefully by now the procedure has been successfully completed and you are recovering and resting comfortably in post-op or better yet, at your hotel room in Detroit.
With gentle hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
I just got on the computer and read your thoughtful update regarding being all prepped and ready for the Cryoablation. Hopefully by now the procedure has been successfully completed and you are recovering and resting comfortably in post-op or better yet, at your hotel room in Detroit.
With gentle hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
Re: Ivan rocking it since 2003
Everything is done. This damn thing was growing fast. Dr. Littrup reports it to have been 1.5 cm at the time of ablation, while the other was 1.3 cm. Still in the recovery area, heading out soon.
Re: Ivan rocking it since 2003
Ivan i hope you are better soon!
An I am so glad you took care of this so fast!
An I am so glad you took care of this so fast!
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Ivan rocking it since 2003
Ivan,
Wish you a speedy recovery.
Wish you a speedy recovery.
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Ivan rocking it since 2003
Dear Ivan,
I Hope that this finds you back at your hotel room by now resting comfortably and with no post-op pain, or at least if you have any pain that it is well under control with adequate pain meds. I am so grateful that you were able to move forward so quickly with having the Cryoablation before the rapidly growing mets were able to get any larger. Sadly, too many doctors take a "wait and see" approach about suspected mets and don't seem to know, acknowledge, or act upon how quickly ASPS mets can grow in some parts of the body since it is typically a slow growing disease.
You and your body have been through a lot the past couple of months with your brain met resection and now this abdominal Cryoablation, so I Hope that you will give yourself and it plenty of time to recover and heal. Enjoy your R & R time in Detroit, travel safe on your Homeward bound trip, keep the Board updated on your recovery as you are able, and know that you are being held very close in heart and caring thought.
With gentle hugs, best wishes for a successful outcome to the Cryo procedure and a speedy recovery, and continued Hope,
Bonni
I Hope that this finds you back at your hotel room by now resting comfortably and with no post-op pain, or at least if you have any pain that it is well under control with adequate pain meds. I am so grateful that you were able to move forward so quickly with having the Cryoablation before the rapidly growing mets were able to get any larger. Sadly, too many doctors take a "wait and see" approach about suspected mets and don't seem to know, acknowledge, or act upon how quickly ASPS mets can grow in some parts of the body since it is typically a slow growing disease.
You and your body have been through a lot the past couple of months with your brain met resection and now this abdominal Cryoablation, so I Hope that you will give yourself and it plenty of time to recover and heal. Enjoy your R & R time in Detroit, travel safe on your Homeward bound trip, keep the Board updated on your recovery as you are able, and know that you are being held very close in heart and caring thought.
With gentle hugs, best wishes for a successful outcome to the Cryo procedure and a speedy recovery, and continued Hope,
Bonni
Re: Ivan rocking it since 2003
This has been a difficult day for me, but it has finally made a turn for the better.
I have felt nauseous and drowsy. They sedated me as usual but they used more than the usual amount. I vomited twice - upon coming to my room, and then again upon waking up after a 2 hour nap. I didn't eat anything for 24 hours.
Now I feel alright. I was able to eat some crackers and a couple of pieces of fine dark chocolate (Lindt, make sure to read the label to verify that it's soya lecitin free
), as well as drink some tea. I didn't really get out of bed, I feel much worse than after any lung ablation prior to this. Pain isn't a significant factor. I expect tomorrow to be much better.
I have felt nauseous and drowsy. They sedated me as usual but they used more than the usual amount. I vomited twice - upon coming to my room, and then again upon waking up after a 2 hour nap. I didn't eat anything for 24 hours.
Now I feel alright. I was able to eat some crackers and a couple of pieces of fine dark chocolate (Lindt, make sure to read the label to verify that it's soya lecitin free
), as well as drink some tea. I didn't really get out of bed, I feel much worse than after any lung ablation prior to this. Pain isn't a significant factor. I expect tomorrow to be much better.