Jen from California - Dx 2009

[jenhy168]

Hi Debbie,

Trying vandetanib is a shot in the dark as nobody has tried vandetanib specifically for ASPS.

But I do think that vandetanib was used to try to treat other kinds of sarcomas like Ewings. I assume this is why he chose vandetanib?

I have to ask my onc to see if that specific rib lit up before. I asked him about it via email, but no response yet. I'll see him in the office on Monday....

[jenhy168]

Can a rib met show up on a chest CT scan...?

[D.ap]

Jen
It looks like ct will be a beginning ?
Bone scan helps as well

http://www.cancercenter.com/bone-cancer/bone-scan/
On the road
Will write more when I get home

[D.ap]

My only reconciliation of my said experiences and readings on ASPS scans are that tumors as a rule aren't symetrical / not perfecially round?
Calcification or healed ribs show a different picture and no veins feeding the inflamed area? However can show up lighted
Have you recieved word back from your doctor ?
I hope so Jen for your piece of mind. He needs to know that responding in a timely manner is as important in medicine as prescribing the right medicine in your care. Period !
Hugs
Debbie

[Olga]

Jen, rib met can be initially found on a chest CT scan, especially with the contrast. When you are at the scanning staging, tell the radiologist to pay more attention to that area specifically - they will make a note, it is actually a good idea to tell them about the concerning pains etc. If they find something that looks suspicious, more scanning will be ordered.

[Bonni Hess]

Dear Jen, I Hope that you get some helpful and satisfactory answers from your oncologist appointment today. I Hope too that you are continuing to tolerate the Vandentanib well and that your rib pain is dissipating and resolving. How often are your Vandentanib status scans scheduled, and will the scans be chest/abdominal/pelvic scans or only chest CT's? Depending on the size of a met, I assume that a chest CT will show a rib met, as about ten years ago Brittany's monitoring chest CT inadvertently showed her small breast met and in a later scan also her spinal met, but of course a bone scan will be the best and most definitive scan to diagnose any possible rib met. Take care and keep in touch as you are able. With gentle hugs, special caring thoughts, healing wishes, love, and continued Hope, Bonni

[jenhy168]

Thank you all!
I will def follow up with my doctor regarding the rib. The NP said they didn't see anything in the x ray or chest ct with contrast, but i don't know if they just looked at the written scan results. I asked if they ACTUALLY looked at the scan images, but they didn't respond yet. =/ It's hard to know how thorough they are being so from now on I'm asking them specifically what they are doing....Can't keep assuming they are doing things the right way.

I was hoping to go to see the onc today but had to reschedule to Thurs...so I'll ask again on Thursday.

Vandetanib - we are going to do a chest ct scan every 3 mos. We usually only do abdominal pelvis once a year...
I've only been on vandetanib for about 2.5 weeks so far.

[Bonni Hess]

Hello again Jen and thank you for the additional shared information. I applaud and encourage your plan to request and require more thorough examination and review of your scans. Unfortunately doctors and radiologists can and do make mistakes and omissions as we have learned the hard way several times during Brittany's challenging 14 and a half year ASPS journey, with one of the most difficult and dangerous challenges caused by inexplicable/ inexcusable inadequate scan review and reporting by both the radiologist and oncologist in the case of Brittany's clearly visible but unreported spinal met. Also, I encourage you to.request that your every three month monitoring Vandetanib scans include abdominal and pelvic scans because chest CT scans alone are NOT adequate to determine possible disease progression since unfortunately mets may and sometimes do develop in other parts of the body even if the lung mets appear stable as we experienced with Brittany's liver met 11 years ago. Adequate scanning is critically important and essential in managing and fighting this unpredictable disease, and unfortunately too many doctors naiively or irresponsibly fail to schedule adequate scans erroneously relying only on chest CT's to monitor possible disease progression. Hopefully your doctor will cooperate with your scan requests. With deepest caring, positive thoughts, healing wishes, and continued Hope, Bonni

[jenhy168]

Thanks Bonni~

I had another doctor look at my Chest CT scan and he said he couldn't see anything in my rib either, so I hope that's the case. I still have my bone scan coming up.

How did Brittany treat her spinal met? With Cryo?

[Bonni Hess]

Hello again Jen, I am grateful that the second doctor's review of your chest CT did not find a rib met, and I am very Hopeful that the bone scan will confirm his opinion. Brittany's large cervical/thoracic spinal tumor was initially resected, but the very experienced and extremely competent oncological neurosurgeon was unable to completely remove all of the tumor because it had invaded the spinal canal. Post op maximum dose proton radiation failed to destroy the remaining tumor tissue and actually seemed to cause rapid progression along the spinal cord necessitating an emergency major Life threatening/ paralysis threatening surgery which resulted in one third of each of seven vertebrae being removed significantly weakening Brittany's neck and upper back and heartbreakingly causing her severe, chronic, and very debilitating spinal pain. Had the spinal met been reported by the radiologist when it was clearly visible on Brittany's chest CT cans six months before it became symptomatic, it could have been easily resected with none of the devastating problems caused by its continued growth and resulting very dangerous spinal canal invasion. Take care dear Jen and stay strong and pro-active. With special caring thoughts, healing wishes, love, and continued Hope, Bonni

[jenhy168]

Thanks Bonni for your thoughtful input. Makes me sad to hear that she had to deal with all that. Does she still have pain in her neck and back now?

I received my Brain MRI w/contrast back yesterday and it said that the 2 nodules (1 was 2mm another was barely 1mm) that was radiated were noted as "unchanged" on the scan results. I assume that's a good thing that it's unchanged...? At what point I wonder that the lesions actually die off and get smaller? I had the brain SRS radiation done in December, so it's only been about 4 months since the procedure. Perhaps it takes about a year for us to actually see the lesions reduce in size...(assuming it was a successful procedure)?

Still taking my vandetanib....suffering lots of acne on my head and face and sometimes stomach problems. I'm also trying to gain healthy weight but it seems kind of hard. My rings don't even fit anymore!

Hope everyone's having a nice Spring~
love jen

[D.ap]

Hi Jen
It's good to hear of your weathering the Med well
At what sched are you having your scans to monitor progress? Have u had your abdomen scan yet?

The SRS treatment may not show reduction as I understand it How much radiation did you receive overall?
We had great sucess on 2 of our 3 with 3 doses of 10gray units to total 30 gray units
Our 5mm and 6 mm showed shrinkage at about 3 months
Remind how big the tumors were?

The over 1 cm tumor only partially responsed so we had to treat in with ablation and it continues to shrink today
WrIte when able
Love
Debbie

[Bonni Hess]

Dear Jen,
Thank you for your thoughtful update. I am grateful that your small treated brains mets have not grown, but am Hopeful that they will begin to shrink and ultimately disappear. Brittany's previously Gamma Knifed brain mets are thankfully no longer even visible on her brain scans, although we don't know if this is a result of the Gamma Knife, the Cediranib, or a combination of the two treatments. Often there is post Gamma Knife inflammation that makes the brain mets temporarily appear to be larger, so it is very encouraging that you are not experiencing this. Did you have Gamma Knife or another type of high dose focussed radiation to treat your brain mets? What is your radiologist's and or oncologist's opinion about the status of your treated brain mets? I am sorry for the difficult side effects that you are experiencing with your Vandetanib treatment, but am holding very tight to Hope that the drug is working to stabilize the progression of your disease and shrink/destroy all of your existing tumors, and that this will be confirmed with your next scans. Regarding your difficulty gaining weight, have you considered or are you using marijuana to stimulate your appetite and reduce nausea? Marijuana has been very successful in helping Brittany to maintain her weight which can be difficult on Cediranib, and it is thankfully legal in Washington. Please take care dear Jen, and keep in touch as you are able.
With special hugs, happy Springtime wishes, healing thoughts, love,and continued Hope,
Bonni

[jenhy168]

Hi Bonni & Deb,

My lesions were 2mm and less than 1mm.

I had Stereotactic Radiosurgery (SRS). It's not exactly like Gamma or Cyber Knife, i forgot what the difference is. I think it's a different machine, but same effectiveness.

From google:
Stereotactic radiosurgery (SRS), also called stereotactic radiation therapy (SRT), delivers high doses of radiation to tumors with great precision.
http://www.cancercenter.com/brain-cancer/srs/

I only had a 1 day treatment of like 50 minutes. about 25 minutes for each lesion. I don't know how strong the dosage is, I'll have to ask. I'll be seeing my brain radonc tomorrow afternoon at UCLA. I do hope i see shrinkage next time in 3 mos after my next repeat scan. *cross fingers*

Since I've only been on vandetanib for about a month, I'm not due for scans for another 2 mos. I haven't had an abdominal pelvis scan this year yet, but I guess I'll have it done when I get my chest CT scan in 2 mos. I will ask my doc to order both.

<3

[D.ap]

Hi Jen

Thanks for the update
Good to hear from you
I hope your scans show good things for you at the next report
We are sitting in oncologist radiologist office as I type. We have 2 spots on Joshuas brain to treat
One is 2mm and other is under 1mm
We will be treating the 2mm with 3 treatments of 10gray as early as Thursday
I'll keep you up to date on our progress on Joshuas post.
Take care

Much love and hugs
Debbie