Kevin from California, US (Dx Feb 2012) - RIP Oct 17, 2014

[mikko]

I´m relieved. I think you made the right decision. Say Hello to Dr. Rolle and others for us. Have a good trip to Germany. And GOOD LUCK!

[Ivan]

Good choice Kevin. I know it's not an easy one, but it has the highest odds (in my opinion) of paying off in the long run.

We have had a few long term successes on TKI (like Brittany and some others), but that's it - maybe 5-10% at best. These are not the odds anyone should choose if other options are available. Also, the side effects that Brittany faces are much, much more severe than anything I have to live with after 5 thoracotomies.

[Kkgriffith]

Ivan: Good to hear Ivan, the side effects are another reason that I want to hold off on the TKI treatments.

Mikko: I will say hi to Rolle and the other doctors for you guys!

So question to Rolle patients (since I am due to go during the week of November 12 till mid December):
-How is the temperature in the hospital (its supposed to be 30-40F outside)? Are the radiators fairly warm and is there anything else that I should prepare for in comparison to the hot summer months?

[Olga]

Kevin, it is really warm inside and it might be actually mild outside as well, varies year to year though. I would pay attention to the walking shoes - some boots with the good traction are necessary as the last thing you need is to fall on an ice when you are able to start you daily walks.

[Bonni Hess]

Dear Kevin and Connie,
I'm sorry to have been out of contact and unable to make any input and offer my personal advice regarding your treatment decision, but I was on a Caribbean cruise and then stranded on the East Coast and unable to fly back to Seattle for several days due to flight cancellations caused by Hurricane Sandy. For all of the reasons that you have listed and those that have been discussed by Olga and Ivan, I completely agree with Olga and Ivan's advice and the decision that you have now made to go forward with the laser resection with Dr. Rolle rather than pursuing a systemic TKI treatment at this time. The only reason that we finally pursued a systemic treatment for Brittany after eight years of trying to manage her disease with multiple resections/ablations/radiosurgeries is that her ASPS was rapidly progressing with multiple, widely disseminated, and some unresectable/untreatable mets. Without the Cediranib treatment, Brittany would have devastatingly almost certainly tragically lost her courageous battle by now since she had a pancreatic met in an unresectable and untreatable area in the head of her pancreas. Thankfully, the pancreatic met and all of the other innumerous CT and MRI macroscopically visible mets appear to have disappeared or to have died, but Dr. Sawyer thinks that heartbreakingly there are probably still microscopic mets throughout her body that are not currrently CT or MRI visible. Current TKI treatments like Cediranib, Sutent, Pazopanib, etc. unfortunately don't appear to be permanent cures for this very challenging disease, but they may be able to provide some tumor shrinkage and disease stability for patients who have no other treatment options and until another more effective and long term/sustained/permanent treatment can Hopefully be found. As has been noted and as Brittany has heartbreakingly experienced, the side effects of TKI drugs can be very harsh and debilitating and certainly negatively impact quality of Life. I personally feel that the theory of "just trying" a TKI for a short period of time is a flawed one since discontinuing the drug if the side effects become intolerable or if the drug is unsuccessful can result in rebound and rapid disease progression as has tragically occurred in several TKI patients on this Board. I personally agree with Olga and Ivan that TKI treatment should be reserved for when there are no remaining treatment options. Also, neither Sutent nor Sorafenib which were recommended by your oncologist have, to my knowledge, proven to be very successful in providing significant tumor shrinkage and/or long term sustained disease stability for ASPS patients. Pazopanib seems to be showing some promise in treating ASPS, but unfortunately and frustratingly none of the ASPS patients who I am aware of who are currently taking Pazopanib have shared their anecdotal treatment information and results on this Board so it is difficult to make an informed decision on the efficacy of this drug.
My very best wishes and most positive thoughts will be traveling with you to Germany, and I will be holding very tight to Hope for a very successful outcome to the laser resection. Please take care, travel safe, and keep the Board updated as you are able.
With special caring thoughts, warm hugs, healing wishes for Kevin, and continued Hope,
Bonni

[wangcns]

Hallo from Germany!

It is very nice this time of year, even for us tender-skinned Californians. The weather is cold but with mild, clear skies, very little wind, and no rain or snow. Hooray! I have lived in California my entire life, with the exception of one year spent studying abroad in Tokyo, so my understanding of "cold weather" is limited. I pretty much just packed my snowboarding gear, minus the snowboard :p

Kevin had his surgery on Wednesday, the 14th. We don't have the exact number yet, but Prof. Rolle stopped by to see Kevin in ICU and said over 120 mets were removed from the left lung. They also let Kevin stay an extra day in ICU and removed one of his chest tubes, before releasing him into general population today. The only hitch in all this is that Kevin's epidural line broke on his last night in ICU. They called back Chief Krassler but the decision was made not to put it back in and to manage the pain in a different way. So far, this surgery has been more painful for Kevin, but we are speaking up about it more and being insistent about Kevin's needs, to make sure we don't have a repeat of Kevin's painful experience from last time. Novamin (which is the primary painkiller they've been giving) just doesn't seem to work on Kevin.

On a side note, for those of you who don't know about Airbnb, if you're trying to save money on hotel costs while staying here for this surgery, I recommend using Airbnb.com. Local people rent out their homes/condos/apts, whatever and it's much cheaper than a hotel. We will be staying in a refurbished farmhouse close to Dresden, after we get out from the hospital. We flew in straight to the hospital and are using the time we spent sightseeing before the surgery last time, as extra recuperating time this time.

Oh, and some good news: it appears Kevin's lung function has actually improved since before his previous surgery, despite the thoracotomy done on his right lung. It's good, it means Kevin's healthier lifestyle is making a difference! Will keep you guys posted, as stuff happens.

[mikko]

Thanks Connie for your update. Nice to hear that the surgery went OK. Our regards to Kevin. Take care.

[Olga]

Connie, thanks for an update. It is hard I know, although you make it sounds pretty easy:(
The epidural lines are very easy to break because they have to be very thin in order to be used for an inside of the spine...I even know of 2 people who could not get one inserted into their spine so they had to go with the general anesthesia only, very painful recover was it for them. The main goal is the have the very good pain control during the surgery when the intercoastal nerves are stretched and very irritated so it takes a very long time for them to heal, so it is a good thing that at least Kevin had it in during the surgery and for the first few days after it. I hope it won't affect Kevins breathing training and a recovery.
Thanks for the Airbnb.com head on. May be you'll report Kevin's experience in the laser assisted surgery topic with the practical advices for the perspective patients.

[Ivan]

120.. that new laser Dr. Rolle is using now is seriously KICKASS! During these last few ablations of mine, I've been joking with the medical staff that they are setting a new world record every time for a number of mets removed from one person. As far as I know, it was true. Looks like I'm out now, and Kevin holds that title

My jaw dropped when I got to the point where you said the epidural line broke. Unless you had a thoracotomy and have had the epidural stop working (I had mine not working for a number of hours one time), it just doesn't read the same

it appears Kevin's lung function has actually improved

Interesting, is that VO2Max, or something else that improved? VO2Max would improve greatly from weight loss, since the oxygen uptake is divided by body mass to arrive at the final number. So if his uptake even decreased by 15% but his body weight decreased by 20%, VO2Max goes up.

How has Kevin been training in the last few months? In my experience, it takes 6 months to recover "well" and a full 18 months or more to recover "completely".

[Bonni Hess]

Dear Connie,
Thank you for the thoughtful update, the wonderful news that Kevin's surgery went well, and that Dr. Rolle was able to successfully remove over 120! left lung mets I am sorry that Kevin has been experiencing so much post-op pain, and Hope that has now been resolved. Pain control is so very important to being able to have a good recovery. The only pain medication that gives Brittany any relief is IV Dilautid, and we always have a battle trying to get her as high of a dose as she needs (2-4 mg. every two hours) since she has developed such a tolerance to all pain meds after eleven and a half years of this difficult battle and 23 surgeries/ablations/radiosurgeries.
Please give Kevin a gentle hug from me, travel safe on your return trip Home to California, and keep in touch as you are able.
With special caring thoughts, healing wishes for Kevin, and continued Hope,
Bonni

[wangcns]

Thanks for all the well wishes, everyone. Kevin continues to do very well. We left the Coswig hospital a few days ago, and are currently staying at an old converted farmhouse in Kreischa. Weather is beautiful right now, it snowed the last two days but very gently, and the sun came out this morning. This is a great place for Kevin to rest and recover. I'm about to go to the laser aided surgery section to add some practical advice about finding a place like this for prospective patients.

Ivan - Yeah, that would make sense since Kevin's lost about 40 lb in the last 4 months. I'm guessing his sense of restored lung function was because he still had one unoperated lung, because he says he's really feeling it now. CT scans at the hospital revealed his right lung is not fully healed either, so I don't think a full recovery is quite there. For training, he's mainly been running and doing yoga, especially breathing exercises, but I have a feeling his sense of recovery might have been a little overly optimistic.

Bonnie - Oh thank you for sharing that! Kevin was trying to figure out if it was him, or the painkillers at the hospital, or the fact that he's been on so many painkillers because of the three operations we've had in the last year. The Percocet we brought over from the US seems to be working well, so we're really glad we thought to consult our doctors before we left. I think it's difficult for the German hospital to give us large quantities of narcotics, so they issued us ibuprofen instead, when we left the hospital. Needless to say, it's not quite enough so that Percocet is coming in real handy right about now.

[Bonni Hess]

Dear Connie,
It was so good to hear from you again with the happy news that Kevin has now been released from the hospital to rest and recover in a non hospital setting, which is certainly always more conducive to healing . I am so very appreciative of your faithful updates and for your very thoughtful and detailed shared information and advice in the Laser Assisted Surgery sub topic in the Lung Metastases topic on this Board. The information that you so graciously provided will certainly be invaluable to other ASPS patients and their families who go to Coswig for laser resection with Dr. Rolle.
I'm grateful that you had the foresight to bring some Percoset with you for Kevin's pain control, and that it is working well for him. It is senseless for him to suffer, and ibuprofen certainly isn't adequate following lung surgery!
I Hope that you can both relax and enjoy your remaining time in Germany while Kevin continues his recovery there. Hopefully you will be safely back in California in time to enjoy the Holidays in the warmth of your own Home and together with family and friends, and with the special joy of knowing that more than 120 mets have now been removed from Kevin's left lung
With warm hugs, Happy Holiday time thoughts, deepest caring, healing wishes for Kevin, and continued Hope,
Bonni

[Ivan]

Nice, just update us when you guys get back home.

From my experience, a stationary bike is the _best_ cardio exercise in the first month after surgery.

[Josh]

Kevin,Connie: I hope recovery is going well for Kevin. I sent you both a PM; I was hoping you could answer some questions as an American going abroad for this surgery. Hope to hear back from you before we leave in 5 days, mainly about using phones and 3G abroad.

[Olga]

There is a link to Kevin&Connie experiences with two surgeries Kevin already had in Coswig by Dr.Rolle http://cowandcheesehealth.blogspot.ca
They both are wonderful writers especially Connie and you might want to read it all as there are many very useful details there. As I understand they used 3G abroad but found it to be very expensive and ended up by using coin operated internet access in the hospital lobby (bills can be changed for coins at the reception, just shoes them the money and say internet).