Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Kevin and Connie

It's great news that Dr. Rolle accepted you for treatment. Say "Hi" to him from me when you get there I think you will enjoy your stay there.

I had 4 thoracotomies in Coswig (2005 x 2, 2008, 2009) with 200+ mets removed which is the world record, I believe. Now my lungs look quite clean on CT scans. Looking at old scans scares me, actually, because there are so many nodules visible. Now there are less than five left, some of which are probably scar tissue. During the last 3 years, I've had a few cryoablations done on some remaining nodules as part of what I hope will be the final cleanup.

A thoracotomy is a very painful procedure, with the worst being the first few days until they remove the chest tubes. The good thing is, there is a daily improvement and it gets better rather quickly. Once the tubes are out, you will feel relatively well.

As far as sport goes I can give you some good advice as I'm a competitive athlete. You can start gentle cardio (walking) almost immediately. Then I would progress to biking (they will let you ride a stationary bike at the clinic there for ~20 minutes after about a week), and then finally to jogging no earlier than 1 month after the surgery. Everything you do should be largely pain-free. You can start going to the gym 2-3 week after already and doing basic range of motion exercises and gentle stretching. After 3 weeks you can probably start lifting light weights (50% of max) and progress up slowly. Do not do reps close to max which require you to hold your breath forcibly. Again, let pain be an indicator. Never exercise with advils.

As an added bonus, you can expect to lose 5-10 lb of (mostly) fat as you won't be eating much during the first few days. If you have a very low fat percentage, it might be a good idea to gain a few pounds so that your body doesn't start cannibalizing muscle, but most people don't.

Lift your arm and rest it behind your head as you rest in bed. During the first couple of times I didn't do it, and it took longer to regain the normal range of motion. Take the compression stalkings off at times during the day so that your wife can massage your legs.

Thank you all for the well wishes, everyone! Oh yes, and Kevin and I got married! I am now Mrs. Griffith! We had a very quiet Justice of the Peace courthouse wedding the Friday before we left for Germany. We checked in at the Coswig hospital yesterday and are currently running internet in our room by tapping into Germany's 3G network. Coin operated internet is busted downstairs, so this worked out great.

So far, it's been good. We spent a few days in Dresden before coming here, which was a great mini-honeymoon! Kevin is an artist, so we really enjoyed the Zwinger art gallery, though we missed the New Masters collection at the Albertinum. Our hotel was right in front of it, too. Oh well, next lung

We met Dr. Rolle yesterday, he was very kind and apparently there is another American with ASPS getting treated here. Maybe he's found his way to these forums, a 25-year old from Long Beach? I'm sure we'll run into him soon enough. Anyways, Dr. Rolle said he's only treated 10 ASPS patients in the last 16 years (including Kevin) so I guess that means we probably know of most of them through these forums! I am staying at the guesthouse, as mentioned before and found my way to the Kaufland a-ok. It's very rainy right now (and has been) but rain makes Kevin happy, so please rain gods, rain rain rain! I am really, really satisfied with both Kevin's room and my own. It was certainly much better than what we experienced in our UCLA hospital when Kevin has his primary tumor removed (they gave us a small corner of the SOU curtained off, and I slept in a chair, so the guesthouse is like heaven in comparison!).

Neither Kevin nor I speak German, so it's a little tough communicating but I'm picking some up and the hospital staff is very understanding. Sprechen zie English is my #1 phrase, though kein problem (no problem!) and in-ordnung (ok!), ach so (i see), and ich verstehe (nicht) (i understand/don't understand) are working out pretty good too :p

Dr. Rolle thinks we can take some time between this lung and the other, even up to a year depending on how the surgery affects the growth of the mets in the other lung. We've already been making significant changes to our diet (juicing, green tea, cutting out red meats or any meats treated with antibiotics and hormones, going organic). We've read a great deal of research (and have been sent even more by friends) that show that for a slow-growing cancer like ASPS that aggressive surgical resection of mets plus immune system promoting diet and activities can help control this disease and provide stability. We're hoping, fingers crossed!

I plan to do compile all the info we learned on this trip to add to the many useful guides on these forums, once we finish with everything. Kevin's surgery is scheduled this Thursday, Dr. Rolle said he would like to start with the right lung. I will post an update afterwards.

Love and hope!

Connie

Connie, thanks for an update. It is so good to hear that our community knowledge is used by the ASPS patients to find their way to a better/most optimal care. Every feedback is improving our understanding of this disease and leads to a better survival and quality of life for all of us, patients and families included.
I am wondering who is that other guy with ASPS there at the moment? Most probably someone from our board as well but not that active - some people are on and off as the times goes.
I am so pleased to hear about the wedding - congratulations!- and to see that your guys are determined to make the best from this trip. It is pretty much in line with our attitude as well - make the best out of the life you get, there is no other life without the cancer in store for us so why focus on a hard side if there are plenty very nice moments in our trips to Coswig...
Your writing style is so good - do you want me to open a new topic in the
Board index ‹ Metastatic Disease Treatment ‹ Lung Metastases ‹ Laser assisted surgery at
http://www.cureasps.org/forum/viewforum.php?f=51
so you can keep posting as the time goes? It is cool that 3G network is now avail. as an option to use while there. If you get some questions re. what is going on during/after the surgery, do not hesitate to ask.
Some random notes:
- the hospital entry door is not always open, check the current opening times;
- Stock up some food in the common fridge by your room in the admin building before of the surgery, I have seen family members in a full distress after the surgery that would not go away from the door of the surgical ward and the ICU later (myself included) with nothing to eat (I feed them some leftovers I had - hello Kathy!), you might want to be prepared esp. if you have some eating preferences when under the stress;
- have you found a small kitchen on the floor where Kevin's room is? You can make your own tea any time there. You HAVE to watch that he drinks a lot after he is back from the ICU, they are going to give him an IV drip with the fluids while there but after he is out it is going to be your responsibility that he stays hydrated to avoid the toxic build up. Speaking of which...
- there are few distinct days after the surgery tied to a pain control drugs. First and second days after the surgery he is going to be the nicest person almost happy under the influence of the strong narcotics that are used but soon it can change to an overdose and you get the shift from "I love you" to "I hate you and my life is miserable". So be prepared that it is a sign of an overdose and that you have to report it to attending doc or a nurse. We all have our small funny (and even scary at times) stories about what was done, said and happened under the drugs overdose.
that's all for now, try to go out and walk when the rain stops, Kevin's walking is going to be very limited in the next 2 weeks!

Sure, I'd be happy to post details of our trip and Kevin's procedure under the Lung Metastases heading. We were so much better prepared and knew what to expect (though there were still little surprises here and there, which can only be expected) because of all the information provided by the other patients on this site. Love all of you, hope everyone of you is doing well in your fight against this cancer.

Kevin had his surgery today! I won't lie, I was very anxious earlier today. I also made the mistake of not sleeping, because I wanted to spend as much time as possible with Kevin. The head nurse allowed me to stay with Kevin overnight the two nights leading up to surgery, but in retrospect I think that was a mistake. The rooms are not meant for overnight guests and it just meant I didn't sleep at all and was not in good spirits or had energy the day of the surgery. In fact, I was definitely more than grumpy after two nights of very little sleep and discomfort.

Anyways, Kevin's surgery was a success! I'm just about to pop back into ICU to see him. I gave my regards to Dr. Rolle and the nurse Matias and Marcus for you guys. Dr. Rolle remembers Ivan quite well (as he should!).

Dr. Rolle removed 129 tumors from Kevin's right lung. He said more than fifty of them were in the lower lobe. Kevin is feeling minimal pain, but I think it might be due to the very good painkillers they are piping into his IV right now. I'm going to be on guard for the "I love you! No, I hate you!" overdose signs, but right now Kevin is able to move his arms and legs freely without any undue pain. The nurse Marcus even said he could have a beer tomorrow night, if he wanted!

We were so anxious before the surgery, but in the end it turned out well. After all, it is Dr. Rolle who has the harder job, but we will do our best to make sure Kevin has a good recovery as well. Thank you all again for your support and your very, very useful information. I made sure to stock up on food from Kaufland, so I don't have to take too much time away from Kevin.

Much love from Fachkrankenhaus!
Connie

Connie - congratulations on the surgery being over and nothing critical happened during the surgery...
The pain killers overdose should not emerge earlier than 2-3 days after the surgery. Is Dr.Krassler still the chief anesthesiologist there, was he Kevin's anesthesiologist on the surgery?
http://www.recura-kliniken.de/kliniken/ ... he-leitung
Tell Kevin to lift his right arm when he is not sleeping and hold on something beside his head so the muscles on the right side will be healing in a stretched position. It is much easier for him to start doing it right now when the pain killing mets are in the max dosage.
I have few more random notes:
- When you go to ICU and have to buzz in, you can tell them:"Das ist Connie fur Kevin".
- tomorrow they are going to start to worry if Kevin's digestive system is working fine as the constipation is the most common side effect of the pain killers and epidural anesthesia. I really suggest you - to ask for the very light stool softener (laxative) instead for the one they give there (or he could drink only half of it) as for Ivan is was a mini-disaster when he had to go really fast but it was hard to get up fast enough with all the lines and tubes. I usually bring the very weak over the counter one with me.
- I have been told by the older nurses at the ICU that the best what caregiver can do for the lying down patient is to massage their feet and arms and later shoulders. Do it as often as you can, it improves the circulation and speeds up the recovery - not to mention that it makes the lying down less annoying.
- there are few sport channels on the TV that are fun to watch even without the sound. This is how Dr.Rolle hooked us up to tennis that we are now addicted to. His favorite tennis player is Federer BTW.

I can't thank you enough for your excellent advice Olga. Yes, Dr. Krassler is still the chief anaesthesiologist, really great guy. Though recovery is still a little rough, that is to be expected, and he's actually doing better than he did when he had his primary tumor removed at UCLA. Probably because he had some idea about what to expect from that first surgery, as well as from Ivan's post and your advice, but also because the care at this hospital is so very good, despite the language barrier.

I spent all day with Kevin in the ICU. A nurse came in this morning and taught him some of the physical therapy movements and began the lung training with that little breathing apparatus where you breathe in and out and try and get what I like to call a "high score" on the breath meter. His pain was manageable, except for when they came in to do some kind of fluid drainage from his lungs. He ate his first meal just fine, but got a bit nauseous after they had him stand up. He almost threw up after that first meal, but managed to keep it down and was able to stand. I've been steadily massaging his legs, it seems to really help.

Lunchtime was not so good, he was too nauseous to eat and threw up, but we expected that from Ivan's post. He threw up after his primary tumor resection as well, so we kind of knew it was coming. I think it's just the anaesthetics/painkillers, but he's been drinking lots of fluids and the nurses/doctors don't seem too concerned. The nurse Marcus is absolutely wonderful. He offered to take us to Moritzburg Palace in his car once Kevin is feeling better and has his tubes removed, and him and Mathias clown around when they empty his pee bag and make Kevin smile with their antics.

When I left Kevin at 9:00pm he kept a banana down and was looking much better (less green!). He seemed to have a lot more energy and stood up just fine the second time. Still a bit nauseous but he hadn't thrown up by the time I left. The only thing I'm concerned about is Kevin is having a hard time sleeping. This isn't surprising, as Kevin normally has terrible difficulties sleeping at night, but compounded with the pain, nausea, and constant beeping in the ICU he's starting to look pretty haggard. They brought him a sleeping pill for tonight though, so I'm hoping he'll be able to get some decent rest. But otherwise, he's in good spirits!

Oh, also, we've been keeping a personal blog about our experiences for our friends and family.
http://cowandcheesehealth.blogspot.ca/
and BTW this is Kevin's art blog:
http://cowandcheese.blogspot.ca

My only disclaimer is since it's a personal blog, there is some language. I know some younger patients frequent these forums, so I can always delete this post if it's a problem. We write some personal details and some rambling thoughts on stuff here and there, but if it can be of any use to others, we would love to share. We don't mind who reads the blog, as long as it can help others.

Connie - thanks for an update. Do not get discouraged if things are getting tough, Dr.Rolle said to us that 2-3 days are one of the worst as the swelling after the surgery gets to its max. He put it in a way "the body finally realized what happened and is in shock". Kevin's recovery is going to be a hard one as there are so many small scars on his lung that need to be healed now so the air might go trough some of them and they might leak for awhile before they heal good enough to keep the lung sealed. Just give it a time and your best efforts, keep watching him to drink a lot. The rehab they do at the Coswig's hospital is amazing considering that in US and Canada there is very little (if any) rehab efforts being done after the lung surgery. They usually kick you out on the 5th day after the surgery in US and they keep you much longer in Canada without any attempt to do a rehab while you there - go figure....May be some reason for the really systemic approach to after the surgery rehab is in a fact that this hospital in Coswig is a specialized lung hospital not the general one.

Thanks for the link - I just just read the http://cowandcheesehealth.blogspot.ca/ (and inserted the link to general Kevin's blog in your previous post). Lots of very useful info and keep doing this great job writing down everything as it goes - we would be glad to re-post it to our board to keep it...

So, when do the tubes come out? I'm guessing one of them should already be out.

Hey all,

Kevin just got moved out of ICU this morning. No tubes removed yet, Dr. Rolle wants to keep the two tubes in for now as he says the damage was considerable and they need to stay. They tried weaning him off his 2nd painkiller today, but by evening (it's about 7:00pm here now) the pain was so terrible, they had to hook him back up. A little worried, the doctors don't like the look of Kevin's lung but they say it's expected with how many mets they removed and that it will be up to Kevin to keep up with the rehabilitation and physical therapy to restore the lung.

Pain dialed up to a 7, they managed to get it back down to a 5. Compounded with Kevin's natural inability to sleep at night, it could be a rough night for poor Kevin.

Oh, and it case you didn't realize that was me, Connie. Borrowed Kevin's laptop, didn't realize I signed in as him, not me. Doh.

Connie, Kevin's surgery was very, very extensive. Even though the damages area is much smaller with the laser assisted surgery versus the reg. one, there are so many burns now on the lung that it is hard for it to get up. Ivan was too transferred to the reg. floor from ICU with the tubes so it happens when the surgery is so extensive. It is better to keep the tubes for a longer time than to remove the tube and to find out later that it needs to be inserted back. Is he on a portable suction device? Make him to get up and stand and to lift his knee standing as often as he can. We are rooting for him.

Well, I can offer the hope of highly diminished pain when even one of the tubes comes out. Then the second, and the then finally the metal stitches.

Each of these will be significant improvements to the pain levels.

I know you guys are following the blog, too, but thought I'd post an update here as well. Kevin has had both tubes removed, along with his metal staples! Just as you said, Ivan, this has contributed greatly in reduction of pain and discomfort for Kevin. He can now lie comfortably in bed and is in much better spirits. Every day has been exponential in terms of recovery; it makes my heart so glad to see my Kevin come back to himself. He's making lots of little jokes and has his energy back.

They've started weaning him off painkillers again, but this time it's working and he's not experiencing terrible mind-numbing pain like before. I'm not sure why before they tried to do it before they removed the tubes, probably some kind of miscommunication between the doctors and nurses. I have a feeling the nurses got yelled at, because they've been a little prissy and very solicitous about Kevin's pain level since. I wasn't there, but Kevin said from what he remembered Dr. Krassler looked very stern and there were some frantic nurses running in and out. Oops.

I think Kevin is also feeling better because the doctors okayed him using his cannabis oil candies. I know marijuana is a controversial drug, but I do have to say it's helped Kevin a great deal. Kevin has always had terrible sleeping problems, he's gone to doctors and tried prescription sleeping drugs and all sorts of stuff and in the end, it never works. Sometimes it helps him fall asleep, but then he wakes up in another hour or two, right back where he started. That's what his experience with the sleeping meds in the hospital has been like. We've tried meditation, soothing music, everything. In the end, it's always been marijuana that has worked the best. Using the candies, he's able to get a few hours of deep, restful sleep which has done more for him than anything else.

Well, I think this week after surgery has mainly been dealing with the ups and downs of pain management and healing, but Kevin is definitely on the upswing. It is incredible to see how fast he's recovering day by day. We planned for 15 - 18 days after surgery, as you guys recommended, but Kevin has been doing so well Dr. Rolle thinks two weeks after surgery (next Thursday) will be just fine for him. If that's the case, we'll go back to Dresden and take it easy for a few days before we go back to the States. This has been quite an experience, as I'm sure you all know.

I've been typing up an English-speaker's guide for this journey. The hardest thing about this whole thing is feeling like I can't really do anything for Kevin, other than be here for him, and even that sometimes has been hard. But Kevin assures me this is more than enough, and I do want to help others just like you guys have helped us. So as a writer, I thought the best thing I could do is use my words to help other ASPS patients. The guide is still a work in progress, but once I have a completed draft I'd love for you guys to look it over and make any suggestions, comments, additions. I will try and collate all the info on these forums as well into the doc.

This trip isn't over yet, but I feel like we've gotten through the hardest part. Again, thanks to all of you we've felt like we were never alone on this path.

Lots of love from Germany,
Connie

Connie, thanks for an update.
I have a comment re. Kevin's prescription cannabis oil candies. I think that they are only approved for use in a few US states, but not in general so Kevin might need to use them all before coming trough the customs into US on arrival. They might be not allowed into the Germany as well as besides the need for any prescription to be labelled and be in possession of its lawful user (the person that they have been prescribed to), the drugs have to be allowed in the country you are entering. It is insignificant now as nothing happened when you guys were entering Germany but they are very strict law obedience wise and this discussion might help you or other patients in the future.
Pain management is a very complex subject. Thoracotomy is considered to be one of the most painful surgeries. They need to block the pain and they do it well in the first days but overdose builds up quickly and it interferes with the healing process, and people behave inadequate - they can not exercise correctly and start to have hallucinations, mood disorders - depression and can even tear their tubes or epidural lines out and run out of hospital. Some of the strong painkilling drugs reduce the breathing volume and make it shallow - that one they do not want to allow as it may lead to pneumonia. They are trying to avoid that gradually lowering the dose or substituting the drugs and in the process there is a lot of bumps on that road to recovery. Typically they do not release the person with two tubes and the epidural line to a general ward from the ICU but the extensive surgery like Kevin's (and my son Ivan made it once to the gen. floor with two tubes) had is an exception. The epidural line is very fragile and can not be made thicker as being thin its main advantage, so it can be inserted into the spine between the nerves. People have to be very, very careful with their epidural lines.
Well - anyways it is good to hear that Kevin is now free and can walk. He will now go for the rest of the breathing training downstairs with the group. Ivan started biking at some point there but it needs to be arranged with the docs. Try to stay at the hospital as long as possible though. There are very nice walks in the area that can be made - around the hospital park first, then ask their permission to go to supermarket so Kevin can pick something he would like to eat, then to the city center on Saturday when there is a small fair...But make sure to tell the nurse on a station where you guys are going and for how long.