Make them aware of HOW MUCH blood you are losing this is very important as it can cause a whole host of problems.

Hello Kelly,

I hope this post finds you experienceing results that continue to bepositive. Soon, I believe you will be receiving another PET scan and if it is like the last then that will be terrific.

Thanks for mentioning that Dr. Heron and OR past along their hellos. I meet with Dr. Heron a number and Dr. OR, and his beautiful assistant) onlt once.

Thanks also for the information above. Do you know what kind of unit was used for your treatment? Initially I thought I would be treated usinga Cyber Knife and each treatment would be about 30 min.Instead I was treated with a unit called "Trilogy" and each treatment only lasted +-5 min.

I have completed the Erbutux part of treatment here in Atlanta a last week I had a first PET scan since treatment. This week I will find out what the results are. I am hoping for the best but fearful that all will not be as I wish. I will be posting the info I receive shortly.

Take care,
nocam

Best wishes, Nocam, on your PET scan results. I hope they are all you hope them to be!

xoxo,
Kerri

Hey Nocam,

Good to see you post. I did get a PET at 10 months post treatment a month ago and it was clear so I was happy with that. next scan scheduled for March 5th.

I see you are worried about scan results, well can't help you there as we all hate the wait for results and fear a bad one. I am hoping yours are as good as mine have been.

Keep in mind that Cyberknife is just a brand name for a type of machine that was one of the first to deliver stereostatic (sp) radiation. This is the type of radiation you recieved just with a different machine (trilogy). This is the same machine they used on me and the same type of treatment that Charm just completed.

Charms results are due in this week also and I am hoping we hit three for three on our scans for this type of treatment. Please let us know what your results are.

Kelly

I to look forward to a very positive outcome for Charm this week.

Kerri

Thanks for responding with you kind thoughts

I posted this elsewhere but I think this is a much better location.

braziliangirl

In a post somewhere, can't find it, I ask what "positive closure" meant and you responded with an answer. It turns out that your explanation was what I thought it was and recently heard about. Previously I had only heard about "flaps" (use of skin from another part of the body)to fill in the portion of the tongue removed. Did your Doctor ever propose using a flap instead of positive closure. If so, why was positive closure used instead of a flap. It seems to me, someone that knows nothing about it, that positive closure would be better. What do you think.? Do you have an problem with "aspiration" (I believe that is the word) where fluids etc. can go to the lungs (very dangerious)instead of the stomach? I have just completed a second rad and chemo treatment for a recurrence. If it did not work, I am afraid it may not, then surgery will probably be necessary. I will know some results this week so I am starting to think about what options I may have.

Thanks for any time you have for explanation.

I have my PET scan results back (shown below) and unfortunately, to my surprise, it seems my trip and additional radiation treatment at Univ. of Pitt Medical Center and Urbitux given in Atlanta accomplished nothing. The only good news was that the tumor is still localized and no lymph nodes or spreading of cancer cells is apparent. If anyone has any suggestions or thoughts too offer I look forward to hearing them.

�There is a large area of increased FDG activity in the right side of the base of the tongue in the same area as was previously seen on the PET CT scan of 6/11/2012. This area is larger than the previous study and on the PET scan measures 2.9 x 2.5 versus 2.5 x 2.3 cm previously. The tumor appears to have crossed the midline slightly to the left side.

No other area of abnormal FDG activity seen in the neck and the CT component is also unremarkable. Patient�s head is rotated to the left side resulting in unusual appearance of the tongue and soft tissue of the neck�.

Other things were stated but it seems that which is shown above was of greatest importance. I am shocked that radiation is not killing this ball of cancer cells. It seems to me that this second round of very focused radiation would have accomplished something. The radiation oncologist ask if I would like for her to look at some other possibilities besides surgery and I told her yes. One thing she is going to look into is a clinical trial somewhere. I tried that once but got lost in all the verbiage.

Tomorrow I meet with the ENT I have been working with.

Nocam,

I just read your post and feel like I got a swift kick in the stomach. I am surprised to see the tumor had no reaction to the radiation. This treatment involves fairly high doses of radiation so you would think the tumor would have diminished in size if only slightly. In your case it actually increased slightly.

I know that it is cold comfort knowing that surgery is still an option and that you are in no worse a situation than you were in when you started this. It looks like your tumor is completely resistant to radiation treatment. I have heard of this but have never run into it on this board. If someone else has some experience with this please chime in.

The good news is that the cancer has remained localized and there is no metastasis to other locations or lymph nodes (again, cold comfort).

I feel bad as I was the one who recommended you give this a shot. I don�t know what to say about that other than I am sorry if I have caused you any undo pain or discomfort.

I�m still pulling for you. Please keep us informed about what the doctors are saying they want to do next.

Hi Nocam,
I'm sorry to hear that your tumour has not responded to the radiation.
Please don't discount salvage surgery to treat this.
Kris required salvage surgery when his BOT tumour reoccurred 10 months post chemo and rads.
The tumour board told us that as chemo and radiation had not worked why would we try it again. Their recommendation was for surgery. This was the only option that offered us a chance of a cure.
Would a clinical trial be a curative option??
Please don't waste time . As of now your tumour has not metastasised. Proceed with whatever you do decide ASAP.
Tammy

Nocam

Oh No. A bad scan result is a real life nightmare. As Kelly noted, no tumor shrinkage is highly unusual but the term radiation resistant is exactly the explanation I got from my CC when I asked how in the world could my tumor come back in the same spot within a year. But then, back in July when you started this thread, your doctors thought that surgery was the way to go rather than more radiation and you even had it scheduled. Based on what happened to me, I understand why you wanted to try radiation instead one more time.

I agree with Tammy that now salvage surgery should be considered. Yes there are consequences, but if I had not had the surgery early in 2009, I'd be dead by now. It did the trick on getting rid of that radiation resistant tumor. This most recent cancer is "new" and in a different location than the original tumor.

I'm sorry this has happened to you. Your posts have helped make clear some of the problems with marketing by hospitals as well as the false hopes raised by newspaper stories that everyone can be treated with robotic surgery. I was crushed also when rejected for TORS and had to go the split open the jaw and scalpel it out routine of salvage surgery. I was really hoping for a good PET result for you. I was remiss in not thanking you for your well wishes on my MRI.
So consider the surgery now as that has the potential to cure this.
Hang in there.
Charm