Jen from California - Dx 2009

[Olga]

Jen - 200 procedures a yea is a VERY good volume, I would not have any problems with going with this dr. Also there are the locations where the advantages of the cryo versus RFA are very subtle and as long as it is not that close to the main blood vessels it is ok, so do not feel that you are getting the inferior treatment options. There are very distinct advantages of staying in you own insurance networks versus paying out of pocket - if there are complications you get treated under the same approval as you had the procedure done and we rosk every time going out of country for the surgery/procedure - thankfully we managed to come home every time before anything bad started but it was pretty close few times.

[D.ap]

Hi Jen
I'm glad you are going forward with investigating the ablation of the liver tumor .
Will the rad doc be using real time imaging with the procedure ? So as to not over treat the tumor?

Our liver tumor was on outside of liver as well and caution had to be taken as the heat was pretty dog gone close to the outside skin layers , increasing the chance of a burn which a patient shouldn't be subjected to as it increases the possibility of infection . Lots of cavity saline solution was used as a buffer between the tumor and outer skin ? Can this be performed with RFA? Ours was microwave frequency verses radio frequency that I understand your doc to perform .

Any way write when you can and give Kiwi some scratches and of course hugs from the Kansas clan .
We had warm weather too today and I sure am enjoying it as well
Love and hugs to you
Debbie

[jenhy168]

Hi Debbie,

Thanks for your reply. I actually didn't know there's a difference between RFA and microwave frequency. I thought they were the same. I'm pretty sure we are going with RFA but I will make sure.

I asked if my skin would be burned and he said no.

When he explained the procedure, he mentioned that they would be using live CT & ultrasound to guide the procedure. He said they usually treat a little bigger than the actual size of the lesion. I forgot how much more size wise they treat....5-10mm? 5-10cm? CM seems kind of big...

Debbie - why did your doc decide to do microwave rather than radio frequency?

[Bonni Hess]

Dear Jen,
I am grateful that you are moving forward with treatment for your liver met because as you are aware, liver mets tend to grow relatively fast. I agree with Olga that Dr. Padia sounds like he is well experienced and very knowledgeable, and it should be fine for you to have your liver RFA procedure done by him rather than enduring the expense and inconvenience of traveling to Detroit. Brittany had her liver RFA with an interventional radiologist at the University of Washington in Seattle in 2004 when RFA was a fairly new and relatively little known procedure. In fact, Brittany's Seattle Cancer Care oncologists had told us that there were no treatment options available for the liver met because it was located in an unresectable area and ASPS is sonotoriously radiation resistant. Fortunately, we had read about RFA in our research and when we asked Brittany's doctors if that would be a possible treatment option, they agreed that it might be, but didn't even know that it was a procedure being done at the University of Washington until we insisted that they investigate the availability for us!!... As in many of our experiences during this challenging 15 and a half year ASPS journey, being very pro-active and well researched provided us with a viable treatment option that was frustratingly not initially offered to us by the doctors. Brittany's liver RFA was thankfully very successful in destroying her liver met and she had minimal post op pain, a short two day hospital stay, and a very speedy recovery from the minimally invasive procedure. Brittany also consequently underwent a successful RFA for her tibia met at the University of Washington in 2005. I Hope that you will be able to obtain approval for your Axitinib so that you can begin a combination Opdivo/Axitinib treatment soon. Perhaps you or your oncologist could request and obtain some data from Dr. Breelyn Wilky in Miami to document to your insurance company the success of the Opdivo/Axitinib treatment for ASPS patients. Take care dear Jen, keep the Board updated as you are able, and enjoy your beautiful California sunshine which we desperately need in the continued chilly and VERY rainy Pacific Northwest !! With special caring thoughts, healing wishes, love, and continued Hope, Bonni

[jenhy168]

Thanks Olga, Bonni and Debbie for your support and input.

Since my liver met is relatively small at 13 mm, and RFA is minimally invasive, it will be an outpatient procedure.

I asked my oncologist to see if it's okay to be on Opdivo while getting the RFA, and he said it'd be fine. Obviously I won't get the Opdivo infusion on the same day as the surgery, but hopefully it can be scheduled at least several days apart so I can get some rest in between.

It's wonderful and amazing to hear despite RFA being pretty new back in 2004 that the liver RFA was successful for Brittany's liver met.

Debbie - when you say you've read liver ablations can elicit systemic growth...do you mean getting the RFA can possibly cause increase in growth in my other mets elsewhere in my body like my lungs? Has anyone here experienced that?

[jenhy168]

Opdivo infusion - I'm at the standard recommended dosage. It wasn't lowered because of my size. I asked my onco to see if I should lower it when I started, but he said no.
btw - the opdivo is causing extreme itching and rash on the tops of my hands/fingers and feet. It wakes me up like 10x a night because it's so itchy even when I put itching cream /ointment on...

Not sure why my axitinib dose is 5mg 2 x day. I have the drug now through Pfizer, but haven't started it. Does anyone have experience with being on this drug and side effects?

I am maintaining my weight. I'm all fat no muscle but still the same weight at 103lbs. I have a good appetite and eat usually 3 meals a day. I've always been a foodie so I enjoy eating.

My Microwave ablation is confirmed scheduled for this Friday at 10:30AM by Dr Sid Padia UCLA.

[jenhy168]

Next infusion scheduled for Monday May 8th. They always tell me how much I'm getting each time I get infused, but I usually don't pay attention to the amount.

I'll ask onco why 5mg 2 x /dayfor the axitinib. Do you know what the standard starting dosage is for axitinib?

[Olga]

oral axitinib starting dose for the renal cells carcinoma trial is at 5 mg twice daily. So in my understanding it is a right dose to start. In sarcoma trial with Keytruda they get twice daily at 5 mg orally too, so I am not sure why Deb asked re. dosage.

[Bonni Hess]

Dear Jen,
I Hope that your ablation for your liver met goes well today and is very successful in completely destroying the met. Have a good and speedy recovery and a restful and relaxing weekend of healing.
With gentle hugs, special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[jenhy168]

hi guys,

Had my liver microwave ablation on Friday. It went well, no complications. The doc ablated with about 1 cm margin on each side...so even though the lesion was 13mm, i think the area that was treated was about 30mm total. the first couple days of recovery was very very painful because the pain radiated through my upper abs, my right side of my back/neck and shoulders. They must of hit some kind of nerve or something.

I had to take vicodin for a couple days to ease the pain, but today I'm not on any painkillers and I feel okay. Still sore but the pain is more manageable. My cough certainly doesn't help though.

I will be starting axitinib today when I go home.

Ever since I got out of my surgery, my vision seems a little blurry - as if I can't focus well. Kinda weird. Not sure if there's something wrong with my pupils...=/

[Olga]

Hi Jen, good to hear that it is over without any major complications but sorry to hear about the pain. This is why we prefer the cryo - it is milder to surrounding nerves/vessels.
Re. blurred vision. The procedure was probably done under the general anesthesia or deep sedation so it may affect the vision incl. the strong painkillers that you were taking. What do you think - is it better now since you are off them? You should have a brain scan if it persist.

[D.ap]

Jen
Hope u continue to feel better with each day that passes .
Remember to keep up those fluids as anesthesia needs to be flushed out of your system .

http://magsocal.com/post-anesthesia-tip ... -recovery/

"How long does anesthesia stay in your body
Answer: Most people are awake in the recovery room immediately after an operation but remain groggy for a few hours afterward. Your body will take up to a week to completely eliminate the medicines from your system but most people will not notice much effect after about 24 hours."

[jenhy168]

I feel better now. The pain persisted for about 2-3 days and then the pain decreased dramatically after. Thank you

[Olga]

Jen - it is always like that with the ablations, pretty standard. Now it has to be monitored for the quality - if it was successful in completely ablating this met - an MRI or CT scan with the contrast in 3 and then 6 months. Did you like the doctor? May be they could ablate some of your most concerning and symptom causing lung mets?

[D.ap]

Jen
Glad you're feeling better.
Olgas suggestion sounds like a excellent idea.
Go over ct scan with oncologist and have goals to what lung tumors are the most important to address first .
How are u weathering axitinib ?
Love
Debbie