Jen from California - Dx 2009

[Bonni Hess]

Dear Jen,
Thank you for your thoughtful update. I am so grateful that the pulmonary specialist doesn't feel that that pleural effusion is anything to be concerned about and that there doesn't appear to be any fluid in your lungs. I Hope that the flutter valve will help with your breathing problems and provide you with some good relief.
I Hope too that you are tolerating the Pazopanib well, and my very best wishes will be with you for very good scan results that show that the Pazopanib is working to stabilize the progression of your disease and shrink/destroy your tumors. However, based on our 12+ years of experience with Brittany's disease, and Ivan's and a couple of other ASPS patients' recent heartbreaking diagnoses of mets in other parts of the body than the lungs, I strongly urge you to request that your scans include not only the chest area, but also the abdominal and pelvic area. Unfortunately, this metastatic disease can, and does, develop in other areas of the body even if the lung mets may appear stable. I cannot stress enough to everyone on this Board the critical importance of requesting and insisting on regular and adequate scans. Some doctors are not aggressive or pro-active enough in adequately monitoring this disease, and sadly too many patients have paid a terrible price for the doctor's negligence. I certainly don't want to, nor do I intend to, frighten or offend anyone with this information, but it is worth the risk of doing so if it helps to make ASPS patients and their families aware of the vital importance of being very pro-active and vigilant in monitoring and fighting this disease, and if it ultimately helps to save precious Lives. This is a battle with a very challenging and unpredictable disease, and regular and adequate scans are one of our best weapons in fighting it.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[jenhy168]

Hi Bonni,

I just emailed my onco to ask if I can get a full body bone scan done. Hopefully he agrees and hopefully my insurance will approve it. I will probably ask to get an abdominal / pelvis CT scan the next time I get my chest CT scan, in about 2 mos.

Does anyone know how long bone scans take to get it done? (just curious)

Thanks~

[Ivan]

Jen, a bone scan takes about an hour - maybe a bit less.

[jenhy168]

It seems like a lot of you turn to surgical removal as a primary way to remove / control progression of the disease...Since I have more than 100 nodules total in both lungs, I don't think resection is a good option for me....

However, I'm wondering if I should go through another round of IMRT radiation to the other larger / largest nodules? I already radiated 2 of my previously largest nodules in my lower right lung last year. But I still have two decent sized nodules in my left lung. (One in my perihilar left upper lobe nodule currently that currently measures 13 x 11 mm and a lingula nodule measuring at 14 x 12 mm.)

The last time I spoke with my radiation oncologist, he said that I didn't necessarily need to get the others radiated yet if I'm undergoing drug treatment and things are going stable. But should I just be proactive and get rid of them now rather than later when they are bigger??? Also, my COBRA insurance ends at the end of December and I may be going on Medicare afterwards (which coverage will obviously not be good), so I kind of also want to take advantage of my good insurance now while I have it. Not sure if that's a bad reason to pursue another round of radiation, but financially it matters to me..

Is it better to radiate the other 2 (or maybe more) larger nodules soon? I wanted you guys' input before making an appointment with my radonc.

Thanks everyone~

[Bonni Hess]

Dear Jen,
I am so grateful that you are requesting the appropriate scans to ensure that any possible new mets are found at the smallest possible size rather than waiting for them to become symptomatic as unfortunately and frustratingly happens far too often when oncologists aren't pro-active and thorough enough with scanning for their ASPS patients. If you have any resistance from either your oncologist or your insurance company in agreeing to and approving scheduling of your more extensive and complete scans, there is plenty of anecdotal information and evidence available on this site for you to share with them to support your very valid request. I continue to be very perplexed and upset by the fact that so many oncologists only follow this metastatic disease with chest CT scans when it is known and documented that ASPS can, and too often does, metastasize to widely disseminated areas of the body. Relative met stability in the lungs unfortunately DOES NOT necessarily mean or validate that there are not mets growing in other areas as clearly proven by Brittany's, Ivan's, and many other ASPS patient's experiences with this very unpredictable disease. Please keep the Board updated on the outcome of your scan requests and the scan results if/when you succeed in having them scheduled and done.
Regarding your question/dilemma about treatment for your innumerous lung mets, traditional resection with a thoracotomy would not be a good or even viable option because of your large number of mets, but laser resection with Dr. Rolle might be a possibility and worth exploring if it is financially and logistically feasible for you to go to Germany for the procedure. If not, I would personally recommend Cryoablation to shrink and destroy your largest and most concerning lung mets since ASPS is notoriously radiation resistant and I am unsure how effective IMRT radiation is for ASPS lung mets. Was your previous IMRT radiation treatment successful in shrinking and destroying the 2 large mets in your right lung? Whatever treatment you decide to pursue, I personally disagree with your radiation oncologist about not needing to treat the largest mets now since if they do unfortunately continue to grow, they may be more difficult to treat. The smaller the mets, the better the chance of a successful response to treatment. Shrinking and destroying the largest mets will help to reduce your body's tumor burden thus strengthening your immune system and Hopefully enabling your systemic Pazopanib treatment to be more effective in fighting the disease.
Take care Jen, keep in touch as you are able, and know that my very best wishes are with you.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[jenhy168]

Thank you Bonni for your thorough advice.

I made an appointment to see the UCLA radonc next Friday on the 30th. My IMRT radiation that I had done in April 2012 was successful. I had 2 nodules radiated...and each follow up CT scan has shown that they are "dying" and the tumors shrinking in size. I think my radonc doesn't want to put my lungs through too much radiation if "unnecessary" if the tumors are being stabilized by treatment. However, since the two larger left lung nodules have been recently increasing in size very slightly (even with Pazopanib treatment), I feel like it's probably better to radiate the 2 left nodules sooner rather than later...I also agree with you that it is better to get rid of the 2 larger left lung nodules so it decreases the tumor burden on my body.

I'm not familiar with cryoablation and how invasive this is...I will google / research about it. I do like the idea of IMRT radiation option since there is no pain involved and not invasive.

[Olga]

Jen, you already have a damage to your lung after the radiation treatment, I would not risk by damaging it again. The cryo is fairly low traumatic and there is an excellent interventional radiologist Dr.Suh that I believe works at the UCLA try to get these nodules evaluated by him.

[D.ap]

Hi Jen
Was your IMRT paid for by insurance ? If so I would build a case of how it helped in your disease however you experience a rare but debilitating reaction to the treatment the cryo has been a very successful treatment but may not be covered by insurance. Do you have an HR person through your prior job that you can talk to? The doctor that Olga suggested would be a good ally to have as well. I agree with Olga. You already have one compromised lung you can't chance another happening

Please take care

Debbie

[Bonni Hess]

Hello again Jen,
I am grateful that the IMRT appears to have been successful in shrinking and Hopefully destroying the two treated mets in your right lung. However, I agree with Olga that Cryoablation would be a better treatment option now to prevent more radiation damage to your lungs which could occur with another IMRT treatment. Cryoablation is a minimally invasive procedure which is usually done as an outpatient procedure with a relatively short recovery time. It involves inserting a probe into the lungs to freeze and destroy the tumors. Brittany, Ivan, and several other patients on this Board have had a very successful outcome to Cryoablation which was done to shrink and destroy unresectable or otherwise concerning lung mets. Cryo is most successful for mets smaller than 3 Cm. so this is a treatment option which you should pursue as soon as possible since your 2 larger left lung mets have been slowly increasing in size despite your Pazopanib treatment. Cryo cannot be used to treat a large number of mets, but at least a couple of the most concerning ones can be treated with this procedure. There is documented data on this Board to support the use of Cryoablation for ASPS lung mets if you receive any opposition from your insurance company or oncologist to having this procedure done. Either Dr. Suh at UCLA or Dr. Peter Littrup ( he pioneered the use of Cryoablation for lung mets) at Karmanos Cancer Institute in Detroit are excellent and experienced interventional radiologists who could perform the Cryoablation for you and either Olga or I can provide their contact information for you.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[jenhy168]

Bonni,

To be sure, is it Dr. Robert Suh? There are several Dr. Suh's at UCLA. Do you know who on this board has gone to Dr. Suh at UCLA? Maybe I can PM him / her to get some info on their experience with the surgery and Dr. Suh. Also, do insurance companies normally not approve cryo? I read online in some articles that insurance companies don't cover the procedure...but maybe because those articles are from a few yrs ago.

[Olga]

Jen, I had to remove Bonni answer to avoid the confusion for the readers. Dr.Suh does RFA not cryo. He works at UCLA and dr. Liu that does cryo worked part time there as well as at the Vancouver General hospital (I think that Dr.Liu doesnt work at the UCLA anymote but at some of the Seattle ans Oregon hospitals as a visiting member when it is needed. They worked at the same team before but Dr.Suh is better with the RFA. RFA uses heat instead of cold. If the doctor is very experienced the RFA is usually the same good as cryo except some special locations when cryo has its advantages. If I was choosing, I would go with cryo but if it is not available within the network the insurance pays for I would go with RFA versus radiation or nothing. Especially if there is a very experienced doctor avail. Which Dr.Suh really is.
This is the link to his latest publication on the subject, it will help you to find him
http://www.ncbi.nlm.nih.gov/pubmed/22786987

[jenhy168]

Hi Olga - thanks for the clarification.

So you said that you'd go with cryo / RFA vs radiation or nothing..? Meaning, you really disagree with another round of IMRT radiation? Has anyone on this board had RFA done..?

I wonder if there are any other good cryo doctors in southern california, if anyone knows of any, please advise.

[Bonni Hess]

Dear Jen and Olga,
Thank you for the correction and clarification regarding Dr. Suh and Dr. Liu Olga. I apologize for my mistake/confusion in stating that it was Dr. Suh that had done Ivan's Cryo in Vancouver rather than Dr. Liu, and certainly did not mean to provide misinformation.
Regarding RFA versus Cryoablation for treating lung mets, based on our experience with Brittany having undergone one lung RFA at the University of Pittsburgh Medical Center and 2 Cryoablations at Karmanos Cancer Institute, I would personally recommend Cryo instead of RFA since Brittany unfortunately experienced aggressive disease progression following her RFA procedure. To our knowledge, Brittany's only scan visible mets at the time of her RFA were a couple of lung mets, but following her RFA she suddenly developed several new mets in other areas of her body. We suspect that the new mets may have been caused by tumor cells being spread through the needle track of the heated RFA probe, but we have no way to prove that. Brittany also had a very severe post RFA pneumothorax which required her to be emergency re-hospitalized with a painful chest tube until her collapsed lung re-inflated. Neither the aggressive disease progression nor the pneumothorax occurred following her two Cryoablation procedures. We realize that this may be just an unfortunate coincidence, but we feel more comfortable with the Cryo procedure and with Dr. Littrup's expertise. Having said that, the two separate RFA procedures which were done at the University of Washington by two different doctors were both very successful in treating and destroying Brittany's liver met and her tibia met so RFA certainly seems to be a good treatment option for some areas of the body.
With special caring thoughts and continued Hope,
Bonni

[jenhy168]

I appreciate your input Bonni. I read your postings about Brittany's RFA experience on the other postings under RFA as well. After reading that, I agree with you and would feel more comfortable to pursue cryo rather than RFA. I will still go to see my UCLA radonc next Friday just to see what his thoughts are on the 2 left larger lung mets, and ask for his thoughts about cryo as an alternative.

[Bonni Hess]

Hi Jen,
One additional thing is that my post that Olga deleted because of the confusion/misinformation about Dr. Suh included a response to your question about insurance coverage for Cryoablation. As I had told you in the deleted post, Brittany's Cryo procedures were covered by her insurance, but it took quite a bit of additional effort to obtain the approval because Cryoablation was a relatively new procedure when Brittany had it several years ago. Providing documented data as to the effectiveness of Cryo for treating ASPS lung mets is very helpful in obtaining insurance company approval for the procedure.
With special caring thoughts, healing wishes, and continued Hope,
Bonni