Hello all! <3
fast reply an then huge reply later in a few days a lot happening here being mom an also trying to not be in bad pain...
We are dealing with a 2CM an 1CM mets situation in two places and they are next to each other I am having pain because it has destroyed the bone an i must be carful pre surgery to not eat hard things it can shatter my jaw
If i could just do the thing Olga was talking about i would have the bone is bad!!!
This area was scanned two years ago an nothing so this went wild fast! I still don't know if this is also a infection or sarcoma an again the speed tells be infection an the bone is bad
bone searched will be done yearly now i don't want a looming met doing this again.. it seems it likes my bones more ...
I have so many oncs involved and have said i wanted to look into the treatments Dr L does they said no An i don't remember why i am assuming the bones condition
“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~
PS i love you all so much! Thank you for being here 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~
I say just ask Dr. Littrup directly. Your doctors can't accurately assess Dr. Littrup's capabilities. Yes, the chance is slim, but it doesn't hurt to ask.
I am disappointed with how long they are taking to treat you. Why do they have to wait a month?
Keep in mind also, that you'll have to recover from this surgery before you can have your lung surgery which probably means it's being pushed back 3 months or more. This might not be as critical as the jaw situation, but still.
I hope these next couple of months pass by quickly and everything is done with as little discomfort as possible.
Hi Ivan Ty
Can you post Dr L phone number please :/
“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~
If you need to contact (e-mail or speak on the phone) with someone re. cryoablation by Dr.Littrup:
you should start by contacting Barb, Dr.Littrup assistant:
Call her or e-mail her.
Barbara A. Adam RN, MSN, NP-C
Karmanos Cancer Center
Interventional Oncology -Image Guided Therapy
313-576-8042
DMC pager 313-745-0203 #95883
I know someone who had a jaw bone cryo by Dr.Littrup and a surgery after there was 1 more met discovered in the jaw, I will e-mail them and ask if they are willing to share their experience with you. Their surgery was not that extensive as the one that is planned for you, but the location/size were different.
The area that this is at the mandibular joint area and it is extensive the other is right next to it it would be great to have this work.. But i saw the damage its a lot
There is also nerve involved in this mess that is hurting...
though that has stopped a bit now...
I don't think he will be able to do this because i am not able to even eat crunchy chewy stuff in fear of a shatter If i do this and i know its a lot i will be free of this no other surgeries an then in two months i can have my lungs started... The lung and rib removal was hellish but it will be either less or like that situation i think :/
“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~
My name is Ed. I'm sorry to hear what you're going through.
I don't frequent this board much but Olga shot me an email and asked me to comment on cryo of the jaw.
My wife has had a soft tissue infratemporal fossa cryoablation by Dr. Littrup in 2011. Her tumor was pressing agains the jawbone and the head surgeons we consulted were convinced it had invaded. Thus, Dr. Littrup ablated the soft tumor as well as the adjacent jaw.
Some things we learned:
1) The final ice ball was about 4-4cm in diameter. The ice went all the way through the bone.
2) Dr. Littrup told us then that jaw bone can regenerate after cryoablation
A few months after the cryoablation, there was a re-recurrence on the edge of the iceball. This was at the posterior edge. Presumably, this was because Dr. Littrup could not be aggressive enough at that location since the carotid artery was right there. Another possibility is the carotid artery, being a large vessel, caused some heat sink effect, thus making cryo less effective at that spot. Anyway, there was a small re-recurrence there, in a very difficult spot near the jaw joint. As a result, we had to follow up the cryo with a radical resection, including removal of the entire jaw joint.
Pathology examination proved that everything WITHIN Dr. Littrup's ice ball was completely dead. As in cryo was completely 100% successful within the ice ball area. Furthermore, we are into immunotherapy. My wife and I have had the privilege to be guided by the late Dr. Lloyd Old since 2010. We explicitly chose cryo in because there is clear evidence of an immunosynergistic effect of cryo. It is believed by investigators that cryo causes the immune system to begin to recognize tumor antigen. In my wife's case, her tissue was analyzed for immune activity. What was found was
1) the re-recurrent tumor was 50% infiltrated by immune cells.
2) there was many many islands of tumor surrounded by T-cells
3) analysis of my wife's blood antibodies showed "epitope expansion" to NYESO1 - implying that cryo may have caused her immune system to recognize more and more tumor antigens.
The implication is important because we were told by the top head and neck surgeon at MSKCC that was 0% probability of "Getting it all" when the re-recurrence occurred. He wanted to do implanted radiation right on her carotid artery during the surgery. He said that radical surgery would only buy some time.
Well, ultimately, we did the re-resection surgery but refused any form of radiation because it might hurt the immune effect. As mentioned, it was found that everything was dead except for the re-recurrent tumor on the edge of the ice-ball. All other margins were negative. It was a nail-biter close call situation. We're talking millimeters margin because of proximity to carotid artery (which you absolutely cannot cut).
Despite the chief H&N surgeon from MSKCC telling us that there was 0% chance to "get it all", my wife is still alive and enjoying an excellent Quality of Life because of Dr. Littrup + immunotherapy. She has had 3 putative lung mets cryoed since the head cryo & re-resection in Sep 2011.
Very importantly, there has been no further evidence of head recurrence since surgery of the head re-recurrence.
I don't know the details of your tumor except that Olga mentioned there are 2 in the jaw and they are about 1 or 2 cm, with risk of breaking your bone?
My guess is if they are inside the bone, the chances of getting good cryo margins should be good. If there is "time", I would definitely try to get an opinion from Dr. Littrup. If he thinks he can get it all, I think cryo is a very good option. If margins are not tight, you may have a very good chance at complete destruction of tumor with less morbidity.
However, if your tumor is growing too fast, and if surgery is already scheduled, it may make sense to go ahead with the surgery AS LONG as there is strong chance for complete tumor removal.
Overall, I favor cryo much more over surgery for metastatic patients (which my wife is). The concept is that a metastatic patient will very likely see more tumors. If cryo has 90% chance of killing a tumor completely, I would take that any day over surgery. Why? Because:
1) cryo can be redone
2) cryo can synergize with the immune system
3) morbidity of cryo is exceptionally low & QOL is awesome
4) there is possibility of healing of bone & even nerves with cryo (if you cut out the trigeminal nerve, it's gone forever)
Finally, if you have further specific questions about how it feels after cryo, or even after jaw bone removal, my wife has gone through both and she may be able to share some experience.
Hello Ed
The bone is in bad shape i am on guard to not shatter it even by eating hard foods
I am going to have bone scans now sooner then later an then i will catch these in time so i can do this... I feel like a patchwork doll as many here are.
They are taking the lower joint and also about half of the jaw side.. the are saying they are going to try and not split the lip if you understand that meaning :/
They are using a leg bone and a vessel to supply blood to this new jaw bone.. did she go this this also? I would really love ot talk to someone that has been thru this i am frightened! An yes they are saying they will get it all 100% an that i am very lucky lady!
Olga ty <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~
PS Olga i paged her now also :/ i hope they are not upset at this
“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~
This is Ed's wife, Rene, writing. I'm so sorry to hear about all that you're going through.
I had a recurrent tumor right next to my right jaw bone. In order to picture where it is, imagine the right jaw bone as a "L" shape. The jaw joint is right at the top of the "L". The teeth are at the horizontal plane of the "L". My tumor was right next to the middle of the vertical plane of the "L", towards the inside of my face. (Could you describe to me where your tumors are relative to the "L" shape?)
We decided to cryoablate it first, and then do surgery afterwards. Dr. Littrup did an excellent job with the cryoablation, killing the tumor and cryo'ing right through my jaw bone, so if there was tumor in the bone it would have been killed. We had confirmation of this later when I had the surgery + pathology of that area. I had some numbness to the area -- in my cheek, gums, and tongue, all on the right side. There was swelling after the cryoablation for a few days, and because Dr. Littrup was concerned about the swelling to the airway, I was intubated after the procedure. There was no problem with my airway. However, I did have a complication with the intubation which caused my lungs to collapse, but it was not because of the cryoablation itself.
A few months after the cryoablation, MRI scan showed a new spot appearing right outside the area that was cryoablated. It was very close to the jaw joint. We decided to go for the "big surgery". This involved removing the 1) right jaw joint, 2) the entire vertical plane of the "L" jaw bone, 3) all the muscles in the area. The horizontal plane of the "L" jaw bone was not touched, so my mouth and teeth were not affected.
Reconstruction was suggested by some surgeons, but we found out that in my case, reconstruction does not restore muscle function. It is just cosmetic if the jaw joint is not there anymore. My surgeon advised us against reconstruction because he said the scar tissue from reconstruction can cause more trismus (hard to open the mouth). So, we opted for no reconstruction. It depends what the surgeons say the purpose of your reconstruction is - cosmetic, or for function (chewing). The chewing function may be restored with special mouthguards done by specialist dentists, which may be less traumatic than reconstruction. The surgeons should know if this is possible.
So, I have about a 1-2 inch diameter, 0.5inch deep depression right in front of my right ear where the jaw joint/jaw bone used to be. When you look at me from the front, you can barely see the indentation (longer hair helps). My lower jaw is now misaligned so it's hard for me to bite things. But I went to a special dentist who made a special mouthguard to help me eat -- it's like a retainer for my upper teeth, but it has extra surfaces on it so that when I bite down my lower teeth contacts it. I found that over time, my jaw has shifted or the muscles have gotten used to this new conformation, so now I can actually eat quite well even without my retainer. At first I stayed away from all hard foods, but have been able to incorporate them back into my diet. For things that are hard to chew because of the jaw misalignment (like salad), I put it into the vitamix and make a drink. I have also regained sensation on the right side of my face/tongue over the past few years after the cryoablation + surgery! I think Vit B complex helped with that.
To Amanda and all of the ICUREASPS Family and the extended guests,
From our family to yours . We are wishing everyone A Blessed holiday and A Blessed New year full of Good health and Healing.
You are all in our safe travels prayers
Hello everyone an Edd an Rene <3
I can't post replies right now i am a mess.. my father whom was my best friend has passed ...
I will try and post back soon to everyone and to Rene <3
Love to all!
“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 having pain because it has destroyed the bone an i must be carful pre surgery to not eat hard things it can shatter my jaw 
