Hello,
I am sorry that it turned out to be sarcoma
This doctor is loving and he is also a sarcoma survivor! He treats his patients with loving care! He hates sarcoma as much as we do! http://www.cedars-sinai.edu/Research-an ... an-MD.aspx
He is the doctor that treated me when i was first diagnosed an another sarcoma patient that also loved him very much! Please, get an opinion from him.
PS... If it were myself i would if applicable to the area i would get an opinion from http://www.cedars-sinai.edu/Bios---Phys ... en-MD.aspx
He has advised a few others that have had very difficult areas an situations.
Let me know what happens... i am sorry again it was sarcoma
“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 am so sorry to hear of your news. You two have been through enough over the last year. Praying for only good news from here on out for you both and your families.
Dear Connie,
Thank you for your thoughtful update in the midst of all that I know you are going through with the diagnosis of Kevin's unresectable met on his sacrum. I am so very sorry for this heartbreaking news, but I am grateful that the doctor is moving forward quickly with an appointment to discuss possible treatment options on Monday. My special thoughts and very best wishes will be with Kevin and you for a positive outcome to the appointment that provides you with some viable treatment options that can be pursued immediately. I, like Mikko am wondering what the size of the lesion is, and like Ivan, I am wondering if Cryoablation or possibly Radiofrequency ablation (RFA) might be worth exploring instead of radiotherapy? RFA was thankfully very successful in destroying Brittany's tibia met in 2004. Also, it might be a good idea to seek a second opinion regarding the possibility of surgical removal of the met. I have known several patients who were intitially told that resection was not possible (including Brittany when she had her dangerously located large spinal met and also when she had her dangerously located brain met in her parietal lobe). However, when second opinions were obtained from different surgeons resection was determined to be possible and the tumors were able to be successfully removed. Dr. Fritz Eiber at UCLA is an excellent, highly respected, well known, and very experienced sarcoma surgeon who I would strongly recommmend that you contact to discuss Kevin's situation with. In the meantime, please take care, give yourself and Kevin special hugs from me, and keep the Board updated as you are able.
Reaching out with my deepest caring, healing wishes for Kevin, and continued Hope,
Bonni
As Bonni am myself an others have said please get a second opinion...
“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, actually Dr. Eilber was the surgeon who removed Kevin's primary tumor, both the father and son actually. I imagine Noah will consult with Dr. Eilber, but we can bring it up and see what he says. The tumor is 5 cm. Kevin is meeting with more UCLA doctors today for a consultation to decide what the best course of action is.
So it looks like it's growing into his spine so resection is out of the question. They are trying to see if they can admit him as an in-patient so they can bypass the whole bullshit insurance authorization and start radiation ASAP. It's large enough that he'll need several rounds, on top of a one week intensive radiation session up at UCLA, the rest he can do at a hospital closer to home.
Olga has a good section on radiosurgery for spinal mets that warrents looking at for info. Don't know if it is applicable to Kevins treatment or not ,but if so it really looks to be a more precise concentration of teatment to the offending tumor and it seems to me that the insurance would go for it as it would allieviate the pressure and consequently the pain that the met is creating.
Just a thought
At the risk of over stepping my bounderies,may I respectively suggest for you both to take a deep breath and release.
By all means think this through and get all the info you can.
I appreciate the concern and the advice, thank you all for everything.
With all due respect, Debbie, I know you're coming from a loving place, but frankly it is a little condescending for you to be telling me to take a deep breath and release. Of course we are trying our best to gather all the information for other treatments, while figuring out a way to alleviate Kevin's pain. We are currently seeing the very doctors that have been suggested in these posts and this is their recommended treatment. The encroachment on the spine is a huge concern at the moment, and you cannot understand the pain my husband has been in for the last three four months.
I appreciate the loving intent, but please don't treat us like we're hysterical children. This is not the time or place for that. I know it was well-meant but it was a poorly chosen phrase said at a difficult time.
PS
My husband and I have had a collision repair business for over 30 years, started it in our mid 20's. We have seen and dealt with a lot of insurance changes in our time.
Just because you are denied a procedure/drug etc does not mean you are done. Ask for a letter in writing and also talk with the office insurance people. Develop a relationship with the human resource people. Ask for the doctors help and ask them what they think. In other words don't let it be just your responsibility. You both need to be their for each other and not exhaust yourselves on issues out of your expertise
Apology accepted, I know you meant well and I really appreciate the loving place it comes from, I do.
We've only had issues with having the Rolle surgeries approved, but we've had to wait on everything, from the chemo drugs to getting MRIs. Cigna likes to drag their feet and hope they can get out of paying for stuff. As our oncologist likes to say, there is a very special hell reserved for Cigna insurance claims adjusters. So far, we pay first and wrestle with them later. The fact that we collude with our doctors to find ways of getting treatments to Kevin faster just says volumes about how much they care about getting sick people the treatment they need.
Although the size is may be bigger in Kevin's case (I think), it is a good reference to Tom' case. This location that is close to spine is a very difficult to treat as there is a real danger to damage the spinal column nerves etc, and this is why Tom and Kathy had to go to Dr. Flinkinger and Dr. Konziokla at UPMC. - radiosurgery Synergy on the spine met in L4 was done twice more info on http://www.neurosurgery.pitt.edu/.
Synergy is a dedicated radiosurgical unit (the other types are Novalis or CyberKnife). I do not know if there are advantages one versus another in Kevin's case and what is currently planned to be used by Kevin docs - the conventional reg. dose radiation or radiosurgery.
Some comment off topic - if something you posted seem a little awkward after it is done, you can do an Edit of your own post or ask me or Ivan to remove it.
