Jen from California - Dx 2009

[Olga]

Jen, Cyber Knife=radiosurgery but with the different software. Both use X-Rays. GammaKnife uses Gamma Rays and is a radiosurgery as well in a general sense as it uses much higher radiation dose delivered to a small spot at once. Both, published literature and our board's personal experiences support use of the radiosurgery for sarcoma mets versus radiation therapy. Also an open surgery can be used if the location allows for the uncomplicated surgery.

[jenhy168]

Hi Olga, Thanks for the clarification.

Debbie, what is Josh's doc's reasoning behind treating it over 3 treatments? 2mm is pretty small, so I would of thought it would only require one strong session. Is he doing gamma knife or cyberknife?

I had my bone scan done today and saw the images, but no radiologist results yet. The image showed something in my 8th right rib light up. The same location where I had a previous bone fracture in 2013 and still experience pain when I cough. We won't know if it's a met or not until we get the radiologist's written results back (probably tomorrow). I hope it's not a met, but it probably is even though my X-rays and Chest CT scan with contrast showed nothing. I'm hoping it lit up because there is calcification going on there...

Met with my brain radonc today as well, and she said she sees no new brain lesions, and the fact that the 2 lesions are unchanged after 3 months is considered a success. We will continue to do follow up scans every 3 mos.

[D.ap]

Hi Jen and Olga
The 3 fractions over a 4 day period to equal a total of 30gray units is maybe more manageable for over all exposure? Micro units??

10 first day --then rest--10 3rd day==rest 10 --then 10 4th day.
All I know is our one and only 3 tumors were succesfuly treated with SRS over 1 year ago. Current volume and size are equal to or 2 out of 3 sucesses and I don't question it

In summary brain mets are a force to be recond with..
Don't let them go and attack them with the most power you have at hand.
We are also using Temador again after the SRS About a week out from last treatment

Love
Debbie

[jenhy168]

Debbie, Gotcha. Sounds like a good approach.

What is the temador for? Does he get much side effects after the radiation to brain? I don't think I experienced anything. For Josh's 1mm lesion, are they just going to watch it?

[jenhy168]

So I got my full body bone scan results..
----
FINDINGS:
There is a focus of intense uptake in the seventh rib anterolateral aspect. The differential includes metastasis versus fracture. The recent rib series do not show a fracture and this area.
A second lesion is seen at the posterior aspect of the seventh right rib, close to the spine. This lesion is also suspicious for metastasis.
The previous fracture reported in the left sixth rib, seen on the CT of December 21, 2015 is barely visible on the current bone scan. Findings suggest healing.
Additional foci are seen in the paravertebral areas close to the costo vertebral junctions of the high thoracic region. These are not suspicious for bony metastases.
There is normal excreted tracer in the kidneys, urinary bladder, and GU-tract.
---

My onco is recommending Radiation for the 2 rib mets. Any other treatment options to rib mets? How effective is cryo on bone mets?
I don't know the size of the mets since the Chest CT scan showed nothing and you can't measure size on bone scans....

Also what are your thoughts about the "foci in the paravertebral areas of the high thoracic region"....Do u think I should get a second radiology opinion on this to make sure they aren't missing something? Don't want there to be mets there too but they think it's nothing...


Love jen

[Olga]

Jen, the cryo for the bone mets is not often done so we have less info on it versus cryo for the other locations. But I know for sure that Dr.Littrup done them before with the success. We also had a member here having her bone met RFA with the success. It all depends on the size/location - I suggest to ask the refferral for the consult. with the cryo doc or make a self referral to Dr.Littrup. His contact info is here:
http://www.cureasps.org/forum/viewforum.php?f=55

[jenhy168]

Thanks Olga, so I guess radiation treatment is probably the best route to go with for a rib bone met.

One of the mets on my rib is near the spine, I just hope that the radiation won't agitate it and make it spread to the spine.

[jenhy168]

Hello all,

Not sure why my last post didn't show.

So I'm scheduled for 1 treatment of SBRT at UCLA for my two right rib bone mets (7th rib) for tomorrow.

Also, I'm still on systemic treatment of vandetanib.

~Jen

[D.ap]

Jen
Sending gentle hugs today!

Let us know how you are doing cause we care
Love
Debbie

[jenhy168]

Had my SBRT done last Thursday for my bone met. Everything went fine. Amount of radiation is 20 grays i think?

Originally they thought I had two met spots in my ribs, but after my PET CT simulation planning, they determined they would only zap one spot on the side of my rib. They said that the other spot near my spine that had uptake during the PET scan was probably due to past radiation, and probably not a met. Hopefully they are right since the doc decided not to treat it.
No side effects from the SBRT so far.

[D.ap]

Hi Jen

I'm not sure what to think of second spot unless it was significantly smaller and they had been following it for along time at that size?
But I'm glad you have completed the SBRT and no issues thus far!
What kind of scan schedule you on to follow up with the rib?

Can they include an extended pelvic scan to liver kidney etc and still be able to focus on your rib success?

Thanks for checking in and do enjoy the beutiful weather thus far

Love
Debbie

[jenhy168]

hello all,
So they found another punctate sized (tiny) met in my brain on the right occipital region. Planning to treat in a couple weeks with radio surgery, same thing as last time.

Still on vandetanib treatment, been on it since beginning of March (4 months).

Due for chest CT scan and bone scan next month.

~Jen

[D.ap]

Hey Jen
How are the brain lesions going ?
So far after 2 scans the treated one is stable . The one too small to treat has developed a more enhanced appearance so we really need to stay on top of our MRI's

Would like to write u a PM if u wouldn't mind ?

Love to you
Debbie

[jenhy168]

Hi all,

sorry I haven't posted in awhile...I'm usually floating around the forum reading posts, but sometimes don't get to writing.

I had a brain MRI last month and it showed that all 3 met spots are "stable". No new lesions. So that's good. I'm due for another CT Chest & abdominal pelvis scan in December, so we'll see if the vandetanib is still working. *hope so!*

My Greece trip was amazing...went to Athens, Santorini and Crete. Santorini was my favorite...all the white buildings on the cliffside and the beautiful Aegean sea are breathtaking.

Weather in Cali is about 80 degrees now,...sunny and warm in November

Will update again after my scans next mo.
<3 jen

[Bonni Hess]

Dear Jen,
Thank you for your very thoughtful update. It is so good to hear from you and especially good to hear that your most recent brain MRI showed that your three brain mets are all stable!! My very best wishes, most positive thoughts, and greatest Hope will be with you for very good scan results from your upcoming December chest/abdominal/pelvic scans and that they will show stable disease with shrinking/disappearing mets. Are you still tolerating the Vandetanib treatment well, and are you experiencing any negative side effects from the drug? Perhaps Olga can move your updates to a Vandetanib topic where it can be more easily followed by those who may be interested in the Vandetanib treatment.
I am so happy that you enjoyed your trip to Greece and that you have been able to travel and Live Life as it should be Lived in spite of your courageous ongoing ASPS battle. I am happy too that you are enjoying warm and sunny November weather in California, and Hope that you will have a beautiful and happy Fall and rapidly approaching Holiday season. Take care dear Jen and keep in touch as you are able.
Sharing the great joy of your good scan results and sending happy hugs, special caring thoughts, healing wishes, much love, and continued Hope across the miles,
Bonni