Josh from Kansas - Dx Sep 2012

[Bonni Hess]

Dear Josh,
Thank you for your faithful updates and thoughtful shared information which will be very helpful to other ASPS patients who go to Germany for lung met laser resection with Dr. Rolle. When is your procedure scheduled? Please know that my most caring thoughts and very best wishes are with you for a very successful outcome to your surgery and a full and speedy recovery. I will be anxiously awaiting your next update when your time and the situation allow. Take care.
With warm hugs, deepest caring, most positive thoughts, healing wishes, and continued Hope,
Bonni

[D.ap]

Dear all

I would like to introduce myself. My name is Debbie and I am Joshua's mom. A quick update to Joshua's surgery. It was performed Thursday morning, Dresden time and he is currently feeling fantastic. Today by 3 he was marching in place and drawing his A B Cs in the air with his toes. My husband and I want to give you all a heart felt thank you for all you have done to make this forum such a rich wealth of information for everyone dealing with ASPS. What a God send .

Sincerely

Debbie and Mike

[mikko]

Good to hear that the surgery went well! How many mets were resected?
Best wishes to you and your son and a good recovery. Say hello to Dr. Rolle for Jussi and his parents (Finland).
mikko

[Bonni Hess]

Dear Debbie,
Thank you for your thoughtful update on Josh's lung laser resection, and welcome to this Board. I am so grateful that Josh is recovering so well from his surgery, and I am Hopeful that the procedure was very successful. As the mother of an ASPS patient, I know far too well the immense anguish and deep heartache that you have been going through since Josh's diagnosis in September. I am grateful that Josh found his way to this site and reached out for information and support, and that you too are now participating on it. As you noted, it is an invaluable source of shared information for everyone in the ASPS Community, and I encourage you to visit often and actively participate. Shared anecdotal treatment information is truly one of our strongest weapons in fighting this extremely rare disease. Because ASPS is so very rare and little known, the battle can seem very lonely, but there is strengthening support and encouragement available from those of us on this Board who share the journey with this challenging disease.
Please give Josh a gentle hug from me, and know that he, you, and your family are held very close in my heart and most caring thoughts.
Reaching out heart to heart to share deepest caring, best wishes for Josh's healing and speedy recovery, warm friendship, and continued Hope,
Bonni Hess, mother of 30 year old Brittany diagnosed in July 2001 at age 19

[D.ap]

He had 77 mets removed from his left lung. One was large enough to consider surgical removal but the laser was able to get it. We feel REALLY blessed that Dr Rolle had the courage and determination to pursue his beliefs.

[Bonni Hess]

Thank you for the thoughtful additional information Debbie. It is wonderful to know that as a result of Dr. Rolle's expertise and experience Josh's body is now free of 77 tumors!
With warm hugs for all of you, deepest caring, healing wishes for Josh, and continued Hope,
Bonni

[Ivan]

Not too bad. How long was the surgery?

[D.ap]

Ivan

I believe it to of been about 5 hours plus of a surgery. My questin to you is how is the CT scan read on the lung that had surgery for pin pointing possible tumors? How long before the primary tumor ,that was removed with negative margins ,can truely be examined by scans and be deemed stable?

Thanks for your time .

Sincerely

Debbie

[Josh]

Well, assuming all the tests go well on Monday, the doctor believes we can be released Tues. Then we will spend a week in Munich and fly back the next Thurs. I am feeling quite well, but haven't gone a whole day without pain killers yet, so wish me luck when they pull those. I took your advice and got my GP to prescribe some Oxycodone for the flight back home in case I need it, so I am good there. I am ready to kill a few weeks in the States and then fly back to get my right lung done. We found an onc we like much more back in the States, so I don't need to go back to the negative one I had before. That will make routine scans much more tolerable.

I did have some questions: I have read pretty much all of the personal stories on the forums, but sometimes I miss things when I read. Is there a good chance that these laser surgeries could render this disease gone? Or do a lot of people have recurrance? I know Dr. Rolle could've missed some, but if there are only a few, they can be dealt with using cryo? Or perhaps a VATS back in the States? Does the surgery Dr. Rolle performed make it more difficult for another thoracic surgeon to find the mets, in other words, would the scar tissue created by the laser be mistaken for a met and removed?

[Olga]

Josh, it is good to hear that you are doing fine and going to be released soon. It is not a surprise that you still need the pain killers - it takes about a month for the pain go away as the thoracic surgery is one of the most painful one. You just need to try if the half of the Oxycodone works as well and go off it as soon as possible substituting it for the weaker ones like Tylenol 3 etc. The lung completely recovers from the surgery in about 6 month.
You are asking if the scar tissue created by the laser could be mistaken for a real met and the question about the need to remove it would be asked. It goes like that - you have to explain to the radiologist and oncologist the nature of the surgery you had (ask Dr.Rolle for the print out for them for the future scans reading aid) - because at the first scan after the surgery it is going to look like you have more mets in number and the ones you had have grown - the ones that were not visible on the prev. scan but were burned by Dr.Rolle will became visible as the new small round nodules, and the ones that were visible but were burned will became bigger as well. They have to consider all of them as undetermined nodules. As the time goes, the round scars are going to dissolve into the line and the ones that remain round would be watched over.They need to be watched starting from the second scan after the surgery (first one is very confusing for everyone and is not really telling anything). If they stay stable and are bigger than 4-5 mm, they are just recorded and watched. If they eventually start to grow and there are only a few, they are evaluated for the cryo or RFA. If there are many of them - like 20-30 - you might need to go for the second round of the surgeries with Dr.Rolle as Ivan and Jussi had during few years.
Yes, there are the cases between our patients when the remaining nodules are in the single digits and can be cryoablated by Dr.Littrup or other docs (Dr.Littrup can do a few at once sometimes). It is getting harder as the number of the mets gets higher - when there are hundreds of them like Ivan had, the chance that there are smaller ones that could not be even palpated during the surgery - smaller than 0.5 mm - is greater.
The laser assisted surgery makes it harder to read the scans and to do VATS but makes it easier to do cryo as there is less chance for the pneumothorax.

[Josh]

I am now back to work. Dr. Rolle has instructed me to get another scan 8 weeks from the surgery date which would be 3/14 (pi day) by my reading of the calendar. I have sent him an email asking permission to buy plane tickets now so that we are not getting hit with last minute plane ticket prices. I have yet to hear back, but I am hoping he says this is a good idea.
While in Germany, he had suggested that I go in for chemotherapy between surgeries, but did not specify what chemo should be used. I'm not sure he is familiar with the chemo-resistance of this disease, so maybe that is the reason for his suggestion.
Does anyone have advice on whether I should be looking in to chemo for these weeks prior to my return to Germany? I am hesitant to take the Sutent prescribed by my old onc due to it disqualifying me from the Cedirinib trial.
Also, what can I do to speed my lung capacity returning?

[Olga]

Josh, I am sure that Dr.Rolle knows that ASPS is usually chemoresistant, may be he was talking about the TKI, I do not know. I do not expect him to know about the few rare and documented cases when it responded well to chemo and people were cured by the combination of the chemotherapy and surgery - we had single cases with the good response to traditional chemotherapy MAID, to gemcitabine and to vincristine+celebrex when the remaining nodules were removed by the surgery and those people are the long term survivors now - I guess you had read the Success stories forum:
http://www.cureasps.org/forum/viewforum.php?f=28
plus recent report from Tok in South Africa experienced very good response to MAID again - incomplete though but it might probably be converted into complete one if the residual nodules are resected.
If you try the chemotherapy between the surgeries 1 or 2 cycles, it will be possible to see in the mets resected during the surgery if it works - pathology report - so you will get an information if to continue the chemo after the surgery if it is working or to stop it if it is not. We didn't do that from the fear it would not work and its toxicity may prevent Ivan from having the next round of the surgery interfering with his recovery and breathing rehabilitation. We have so many cases when the chemotherapy did not help that it is really hard to advise anyone to try it or not.
Ivan will respond later re. what he did after the surgeries to build up his breathing volume and exchange quality to the max, but in general you have to keep training with the breathing trainer well and to be physically active - starting from the long walks and moving to the cycling (no running) and sit less on the computer/internet as the lungs are suppressed when seating, you need to walk and keep them working and evenly inflated. Has your pain in the incision area gone? It is important to have a good pain control without overdosing so you are active and it does not stop you from moving right. Try to lift the hand on the operated side and place it behind your head/neck when you are reading or watching TV.

[Ivan]

Also, what can I do to speed my lung capacity returning?

First, you need to get your chest flexibility to return to normal state. Hang on a pull up bar with assistance from your legs.

You should be riding a bike (stationary is OK) and breaking a sweat, but pain free. 30-60 minutes per day. Once you are completely pain free, you can do interval training to raise your VO2max. It's hard training that professional cyclists would do, and it's very effective. Wait a couple of more weeks before you try it.

Do this - http://www.training4cyclists.com/killer ... r-vo2-max/ - I prefer the 30 second intervals with 30 seconds of rest in between. Start with 10, work your way up in both intensity and the number of intervals. Your VO2max will increase like it's on steroids.

[MarietjievdMerwe]

Hi Josh!

Also just want to say all of the very best! I just read your story and would like to wish you the very best of luck. Please keep us updated on how everything went. As you have said, you now have to get better for your beautiful family.

Everybody's stories on how their ASPS are being treated is very interesting as we only have the conventional methods of treating ASPS in South Africa. Lucily my brother Tok's ASPS was treated with great success in this way. Almost killed him, but luckily gave him a chance on life.

Kind regards.
Marietjie.

[Josh]

Thanks again for the support Marietjievd. And thanks for the input Ivan. I have been going to the rec center to pedal on the stationary bike on my days off. I really notice how far I have to go when I am pedaling. I do not make it very long before becoming out of breath, but I get my heart rate up and break a slight sweat. I've found that yoga has been quite beneficial, as it requires deep breathing. I don't do or know any advanced poses, but even the simple ones have really helped out.

So here's the big update from Dr. Rolle's review of my latest scan:
He has noticed what he believes may be a few areas of regrowth in my left lung. I am not sure if he is just being conservative and calling it new growth as opposed to scar/necrotic tissue, or if he is certain. I am requesting some clarification and awaiting his response.
He has said that there is no significant visible change on the right side. He has requested I get another scan in 3 months and send it to him, and, optionally, pursue some chemo in the mean time. This pursuit will allows us to judge the efficacy when I go in for the second surgery by looking for necrotic tissue.
All mets are still less than 1cm, but simply labeled "innumerable" in my onc's notes.

My new onc had my excised primary tumor from last Sept. sent to Caris Target Now in Arizona for analysis, and the report came back with the following "agents of possible benefit":
*fluorouracil, capecitabine, pemetrexed
*gemcitabine
*temozolomide, dacarbazine

I have listed the full profile report at (url will be added later)

Interestingly, one of the agents which was on the list of "agents associated with potential lack of benefit" was sunitinib (Sutent).

I'm not sure why, but the one that he seemed most interested in trying was temozolomide aka Temodar. The timing will work out well, as a round is ~2 months and then I can get my next scan sent to Rolle and hopefully fly to Germany. I see that Bonni had an entry in Chemotherapy section, but it doesn't appear that Britanny followed through with the treatment?

Anyone have any comment on either the Molecular Profiling or on the use of Temodar as a chemo therapy?