Hello Debbie
I am in good spirits this can be handled dealt with an i can continue life for a while free of this devil! There are other survivors with multi surgeries and i plan to be one of them lol
I am leaning towards the met killing skills of Ivans Dr L over open lung surgery.
Though it is felt my many that open lung is safer i am still healing 4 months out from my jaw surgery an i do not feel that i can handle an open lung surgery at this time unless it is an out an out emergency...
It just showed up an so it was not seen in the last scan we did a compare
I would be shocked an so would my Onc if it was cancer it was there to fast between the two scans. Either way where it is it can be zapped he said
Ty for helping me look thru al this stuff. I want clear short an sweet info for my Onc to lok at an then he will be contacting Dr L Ivans Dr I wish there was someone here in Los Angeles that was good at this procedure :/
“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~
Dear Amanda,
Thank you for your very detailed update. I am so sorry for the new and additional concerns and am VERY Hopeful that the relatively large lesion on your adrenal gland is a benign cyst unrelated to ASPS. However, to err on the side of caution, I encourage you to contact Ivan regarding the diagnosis of his adrenal gland met because if I recall correctly it also appeared very suddenly, although I don't know what the time frame was. You may not be able to get prompt responses from Ivan and Olga as they are traveling, but will have computer access and will Hopefully monitor the Board and their e-mails to respond to you when they are able. I am grateful that your doctors are being very vigilant in their care of you and monitoring of your disease. In making your decision about Cryoablation versus thorocotomy for your lung mets, it is important that you know and understand that Cryoablation can only be used to treat a couple of lung mets versus thorocotomy or laser resection which can remove multiple and numerous lung mets. Cryo is usually used to treat a very small number (1-3) of indivdual difficultly or dangerously located mets which cannot be safely and successfully resected. Dr. Littrup makes it very clear that lung Cryo should not be regarded as a way to treat and destroy all of the lung mets if there are numerous other mets, and that either surgical removal through thorocotomy or laser resection will need to be done to remove the remaining mets. or some type of systemic treatment used to try to shrink/destroy the mets if there are too many mets to surgically remove without destroying too much lung tissue. Regarding your question about bone scans, Brittany has a full body bone scan once a year and it is an easy procedure which she tolerates well. She receives an injection of radioactive dye for the scan three hours prior to the scan, and then is released to go to lunch or do whatever she wants before returning to have the scan. Brittany has never felt sick from the dye or scan, unlike when she has to drink oral contrast for CT scans. In regard to your question and discussion with the doctors about CT scans, I think that CT scans are the best option for monitoring lung mets because MRI's can't be used due to the movement of the lungs and PET scans to my knowledge and based on our experience are unreliable and often give false negative or false positive results. However, MRI's are more definitive for monitoring the brain, spine, and abdominal/pelvic area, and MRI does not pose the radiation exposure risk that CT scans do. I Hope that this helps to answer your questions Amanda, but if there is anything else I can try to help provide information about, please let me know. In the meantime, please take good care of your dear self, have a good and relaxing weekend if possible, and know that you are being held very close in my heart and most caring thoughts.
With special hugs, deepest caring, healing wishes, and continued Hope,
Bonni
Amanda
I finally found Dr Littrup's info in the forum http://www.cureasps.org/forum/viewtopic.php?f=55&t=401
Olga posted it a while back
Hope this helps. Maybe he can maybe give a second opinion on the growth on your adrenal gland and maybe knows of someone close to you who could perform the cyro .
Have a good day
Love
Debbie
Amanda, hi, we are in Russia now so I am mot checking the forum as often as usually. I wanted to comment re arena
Growth they found. Do you remember that Ivan also had adrenal met found last year and ablated by drLittrup? It was growing much faster than the usual. A ask them to have MRI of this area to see what it is.
Hi Olga Thank you for responding an i hope you are having a great time!
I will tell them that it is only one an it was not there before an it is 2CM now... they said it doesn't look like sarcoma but i feel odd about that also...
Can Dr L do 4 mets in one lung?
“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~
Yes he can but not at once he usually picks the ones that are growing faster and located in the more dangerous places to ablate first. I would start consulting him already esp. Re adrenal tumor as he has Ivan's images on file and can compare. What their alternative ideas re what this adrenal tumor is? 20 mm and growing fast, needs to be treated anyway regardless what it is. I told you before that there is a very good ablation dr in LA dr.Suh find him and get consultation but Dr.Littrup is the top dr in cryo Dr Suh might be better in other types of ablation I do not know. Start moving fast.
I am not waiting for my Oncs i will start this rolling asap
“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~
Hello Olga an ty for posting tp me while you are away!
I just left a msg with
Dr L office for Barbara
Dr Hakimian at Ceders
Dr Suh
I am now at war!
Olga ty <3 I so owe you a huge fancy smancy dinner if you ever come to Los Angeles lol
an i will also call this other doctor Suh now an see if i can send him the scans...
Its weird this is easy stuff to care for easier then my last operations but for some reason this is more frightening to me an i have no idea why!
“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~
I just spoke to Even at Dr L office an he i s wonderful
I am going to have all my disks sent to Dr L ASAP...
How long should i expect to be staying in Detroit after the adrenal met is taken care of.. How long did Ivan stay ?
I wish Ivan was going to be there also lol GLAD he doesn't need to be there though <3
“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~
I had a talk with a few doctors and found a few things out they don't tell us regularly! an they are important!
Please, make sure after surgery you do NOT have a bladder infection! Be aware this can show up weeks after surgery so if urine id darker or any changes are seen contact your Onc an get a test asap!
Please, have blood work done to see if you are anemic or deficient in vitamin D an B an others!
After our long and physically hard surgeries in most cases minerals are stpipped down segnifficanty! This is not only detrimental to healing but our immune systems in healing and fighting off sarcoma!
A few simple steps will help in your recovery an wellbeing after a surgery! <3
“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~
All disks an other information like biopsy info is being sent on Monday to Dr L an Dr Suh
Next week ultrasound is being done to look at the 2CM tumor or cyst on the adrenal gland.
They said Ultra sound will show them if it is a tumor :/ Crap! Olga will the ultra sound show if it is a tumor?
“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~
CT ALONG WITH MRI AND ULTRASOUND They may all be used
I assume the cyst was found with a CT scan now they are using an ultrasound.
No radiation .
Dr L will also let you know what he sees when he gets the scans
From what i remember there was no jagged edges in the 2CM bolder found on my adrenal gland...
I just read thats a good sign it maybe a syst
But if it grows to 4CM even a cyst is treated like cancer!
*FACE PALM*
Some times i feel like bad tasting jokes are being played on me lol
When Ivan or Brittany if you see this can you tell me what it is like doing this treatment awake? I am afraid! But, i need to know what i am in for an i know the both of you will be hoenst with me <3
“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~
Dear Amanda,
I don't understand the reluctance of your doctors to do an MRI to try to definitively determine the nature of your adrenal gland lesion since the MRI is more definitive than an ultrasound, but perhaps Olga will be able to tell you if an ultrasound is capable of showing tumors and if it is an adequate scan for the purpose of determining cyst versus tumor.
Regarding your request for input from Brittany about her lung met Cryoablation experience with Dr. Littrup, she very seldom participates on this Board anymore because she wants to and needs to focus her time and energy on trying to Live Life without Living cancer through this Board. She relies on me to network and communicate with other ASPS patients and their families because I don't want her to have any additional burdens on her physically or emotionally. Since we were with Brittany in Detroit for her two lung met Cryoablations with Dr. Littrup, as we have been for every procedure and surgery that she has had during the past 13 years of her ASPS journey, and since you are requesting an honest assessment of her Cryoablation experience, I will honestly tell you that her first Cryoablation was very frightening and uncomfortable for her as she said that she felt like she was suffocating during the insertion of the Cryoablation probe since she had to hold her breath for an extended amount of time and not make any movement. Because of that negative experience, we decided for her to have Radiofrequency Ablation (RFA) in Pittsburgh for her next lung met ablation because they were able to put her completely under with general anesthetic for the procedure. However, she experienced a very painful pneumothroax (collapsed lung) after she was discharged from the hospital following her RFA procedure and she had to be emergency re-admitted for insertion of a lung drainage tube until the lung could be re-inflated which took about two days. Also, following the RFA, she heartbreakingly developed rapid and widely disseminated disease progression which we suspect, but cannot prove, was caused by the tumor cells being spread through the heated track of the RFA probe. Therefore, we scheduled her for a Cryoablation rather than an RFA for her next lung met ablation, and thankfully her second Cryoablation experience was a much better experience for her as she received conscious sedation and she had very little awareness or memory about the procedure once it was completed. I am sure that you will do just fine with the procedure dear Amanda, and it is certainly a much easier and less invasive procedure with a less painful and speedier recovery than a thorocotomy which seems to be your only other treatment option for your lung mets. I Hope that this information is helpful to you and that Ivan and any other Board patients who have undergone lung met Cryoablation will be able to share their experiences with you. The known is always less frightening than the known because you can prepare yourself with factual information without your imagination and fear taking control.
Take care dear Amanda, have a beautiful and relaxing weekend, and keep the Board updated as you are able.
With special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni
