Larry from Buffalo --Dx Sept 2011

[Olga]

Larry, hi, welcome to this board. My son had 4 laser assisted surgeries in 5 years (last one was more than 2 years ago) in Germany to remove more than a hundred mets, it is not a procedure as an ablation but a full size open lung surgery. It was only possible because his were very small, 1-2 mm. Dr.Rolle uses laser as a surgical tool - it is a hand held device - he burns the small mets on spot, we have an article about the lung surgery on the main page of this web-site.
I agree with Amanda re. biopsy - it has its risks (dissemination, pneomothorax) and I do not see any advantage of having it, as a matter of fact most of our patients do not get their mets biopsied as there is nothing urgent to get them Dx ASAP and you can just do a consecutive scan and to see if the nodules grown - you are going to have the CT scan anyways so you could just wait to see.

[LarryH]

Thanks Amanda. I have 20 mets in both lungs, all apparantly pretty small. I went for a needle biopsy Friday and the doc was having a difficult time hitting one. Assuming it is asps (there might be a small chance its not, but that seems like a lot to hope for), the question is then what to do. I could wait and see if they lay dormant, or go on sunitinib although the side effects look awful, or fly to Germany and have the mets lasered. That seems more appealing than the medication but I'm pretty up in the air. I would probably have some time after surgery to decide since they tell me I'll be laid up for 6 to 8 weeks.

Larry

[Olga]

Larry - I think that you need to have another chest CT scan to see how they grow (or not) before you decide what to do.
Re. Sunitinib - you have to understand that if it works, it only has a limited efficacy time, until the resistance develops, so in my opinion it is better to save this option for later (i.e. if the surgery is not possible by some reason).
Good luck with the surgery, it is a most important part of your treatment now. Big tumor itself is very damaging for the person's health and quality if life, so it should be easier after the recovery.
P.S. I'll move this topic to a Personal Updates area to keep it organized.

[Amanda]

Hi Larry,
See dam them for doing that an even trying to do this! Have they ever treated ASPS? I would wait if they are all lil like mine and do the surgery an wait three months is 100% what i would do unless they said there were large an in bad areas. I am pissed they even tryed to do the biopsy! Get the other out tomorrow an heal up I would NOT do any drugs yet. You maybe like me read my thread its long an you will need a snack its huge lol
If you would like to send the info to my Onc let me know and YES to also Germany would be what i would do if you are not stable.

If you have time get two body pillows for suport and bend them around where you will need them after surgery... Just a tip i used an others do

You an your wife an family will be in my thoughts an prayers tomorrow!

[LarryH]

Hello and thanks for your support. The surgery apparently went well, tho it took between six and eight hours. I cannot believe the progress I've made in the four days since the operation. Dr. McGrath was pleased and altho the main tumor was large and he had to do some bone reconstruction, he did not have to remove much good tissue. So I'm back to my dilemma of what to do next. I have about 20 mets in the lungs but none anywhere else. The oncologist was not familiar with the treatment in Germany and he asked us to bring in those materials when we meet with him again in 3 weeks. Is waiting and checking every 3 months a viable choice? Especially since these are pretty slow growing and could have been there for a while. Of course, as I age, being 62 now, I would assume that my ability to deal with one of these drugs would be more limited. Any thoughts? As always, thanks and thanks for your own inspirational stories.

[Olga]

Larry, it is always good to hear when the surgery went better than expected.
About what to do next re. lung mets. I told that before that I would just wait until the next CT scan, then request to get a copy of both the scans on a CD and send it to Dr.Rolle so then you would know if he is able to take you for the surgery. Then you can start thinking if you want to go for it or not.
There is an info about the laser assisted surgery here: http://www.cureasps.org/?p=98 it is a little old as we already have not 2 but 4 ASPS patients from this board that went to Germany for this surgery as it works good with the typical ASPS slow growing small multiple mets.
You have to understand though that it is not the procedure as an ablation but the full size open lung surgery and he does only one lung at the time with the interval of a few months in between, it is a hard surgery - thoracotomy.
Recover well!

[Amanda]

Hello Larry
I am typing in the dark everyone is asleep lol I would wait 100% an see an heal and be happy and feel dam blessed you found this and that they are few and small in your lungs. I would also fallow up with what Olga said about sending your file to the doctor in Germany. It maybe that when we are older it grows even slower we just do not know and a drug right now is a very IMHO BAD IDEA. If your Onc would like to come read here as a few i kinow do it would be great There is more research information and also results and treatments and also personal data they will NOT find on the net or with others Oncs. It is important for you to be a strong pro active paitent as you are now. It maybe your cancer will shut off like others have. Please read the Survivors links an read also what choices other have made and gone thru. Five years ago treatments and research were not as discussed as deeply as it is now thanks to the web. Also remember many that are doing great or are fine now have gone on with there lives that werew stage four also and have never posted in the web.
Did you get a body pillow to help with your leg at night? It helps! If you decide you want also my oncs opinion for the lungs his name is in my thread Leland Foshag and he is hreat and positive and if the one that said NO DRUGS you are stable and he was right!
Eat well, rest, laugh and get outside in the sun!
Heal up...
Celibrate you found this cancer early in the game you have alot more to be thankful for.. then to be sad about!

*hugs too you and your family*

[Bonni Hess]

Dear Larry,
I am sorry to be slow in responding to your thoughtful updates, but I have been out of town and away from the computer for the past two weeks. I am so grateful that your surgery went well and that you are recovering well. I understand your concern about the multiple nodules in your lungs, but I agree with Olga and Amanda that you have some time before making the next treatment decision and pursuing it. I think that monitoring the lung nodules with regular scans every three months is the best approach so that you can try to determine if the nodules are actually mets and if they are growing, and additionally you should have abdominal/pelvic CT scans at least every six months, brain MRI's every six months to at least once a year, and a bone scan once a year. Being very pro-active, knowledgeable, and vigilant in having regular scans is vitally important in fighting this unpredictable disease. I personally agree that it is premature for you to begin Sutent or any other systemic treatment at this time since Sutent is unfortunately not a cure, it only has a limited efficacy time, it has some negative and debilitating side effects, and it should be reserved to try to stabilize disease progression if it occurs and resection/ablation/radiosurgery are not viable treatment options. The developed resistance and rebound factor with Sutent and other anti-angiogenic tyrosine kinase inhibitors like Cediranib, Dasatanib, Sorafenib, etc. is an important consideration when making a decision regarding treatment with these medications. Depending on the results of your next scans, you can then make a decision regarding pursuing laser resection of your multiple lung mets with Dr. Rolle, Cryoablation of the largest and most concerning mets, or pursuing a systemic treatment like Sutent or Cediranib if you are experiencing disseminated disease progression to other areas of your body. In the meantime, I Hope that you will be able to give your body time to recover and heal from all that it has been through with your surgery, and to strengthen your immune system to better fight this disease through getting plenty of rest and relaxation. Please know that you are not alone on this journey, and that those of us on this Board are here to try to help you in any way that we can with shared researched and anecdotal experience information and strengthening support and encouragement. Take care Larry and keep in touch as you are able.
With gentle hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni, mother of 29 year old Brittany diagnosed at age 19 in July 2001

[LarryH]

Thanks again everyone. It is so good to hear from people who have experienced this. I was supposed to meet with the oncologist Wednesday but he was speaking somewhere so I only talked to his NP. We had sent the onc information about Dr. Rolle but the NP was unfamiliar with it. They want me to start the sutent but also said it is reasonable to wait and see what the next scan shows. The mets are apparently pretty small at this point. The NIH seems interested in having me because they want Cer... approved or the company will stop making it. My concern with the drugs is what appear to be awful side effects and the rebound effect although the woman at NIH says she is unaware of any rebound effect. I'm pretty sure I will not do anything immediately at least until I have a follow up scan and we can see if there is any progression or if the mets are stable. We have also sent a disc to Dr. Rolle. If the mets are stable now, would you have Dr. Rolle's surgery now or would you wait until there is some progression in the mets? Thanks again. It is really nice to have access to such caring people and all your own experiences.

[LarryH]

One thing I forgot to ask: If I were to have the surgery in Germany, does anyone know what the likelihood is of more mets showing up after the surgery? I would hate to spend the money going to germany, have the surgery and then find that in six months, more mets have appeared. Does anyone know if that is likely or probable? Thanks again.

[Bonni Hess]

Dear Larry,
Thank you for your thoughtful update. I think that it is a good plan to postpone starting a systemic treatment like Sutent or Cediranib until you have a followup scan to try to determine if your disease is progressing. Sometimes after removal of the primary tumor it seems that the disease stabilizes for awhile since the body's tumor burden has been reduced thus strengthening the immune system to better fight the disease. Hopefully this will be the case for you and your next scans will show no new tumors or increased growth of your lung mets. You certainly have some legitimate concerns about the side effects of Sutent and Cediranib, and the risk of rebound should you decide to undergo treatment with these drugs. However, although the side effects of Cediranib are difficult and somewhat debilitating, at least in Brittany's situation she has been able to tolerate the side effects well enough to move forward with her young Life and remain fairly active most of the time. In her case we had no surgical, ablation, or radiotherapy treatment options to remove/destroy the met in the head of her pancreas, and Cediranib was the most promising systemic treatment available that could cross the blood brain barriar to try to prevent new brain mets which had been continuing to appear. It certainly seems that the side effects of Cediranib and Sutent are less severe than some of the very harsh traditional Sarcoma chemo medications such as Adriamyacin, Ifosfomide, and Gemzar. I am very perplexed that "the woman at NIH says she is unaware of any rebound effect" with Cediranib. I find this kind of misinformation to be very irresponsible as there is certainly substantial documented and anecdotal evidence of rebound occuring following discontinuation of both Cediranib and Sutent. I am personally aware of at least six ASPS patients who heartbreakingly experienced rapid and aggressive rebound and disease progression following discontinuation of Cediranib or Sutent. If the woman who you talked with at NIH is truly "unaware of any rebound effect", it is probably because once a patient is taken off of a Clinical Trial due to a failed response, inexplicably, and I feel inexcusably, it has been our personal experience and observations that no follow up of the patient is done by the Clinical Trial research team, nor by the pharmaceutical company. Post targeted therapy rebound with tyrosine kinase inhibitors ( TKI's) like Cediranib, Sutent, Sorafenib, Avastin, and others definitely IS a serious concern, and one which we are painfully aware of with Brittany's Cediranib treatment, but there is some evidence that by immediately switching to a different TKI when resistance to the first TKI develops that resumed disease stability can be achieved. If you have not already done so, you may want to read Olga's recent November 8th posting in the "Medical Publications" topic of this Discussion Board under the "Other Publications" sub-topic in which data is presented relevant to discontinuation of targeted therapy TKI drugs for Renal Cell Carcinoma patients. It is essential that you be very well researched and as knowledgeable as possible before proceeding with any kind of treatment so that you are fully aware of any possible risks, and you can make the best and most informed treatment decisions. Regarding your questions about laser surgery with Dr. Rolle, Olga and Ivan can best address and answer those questions, and hopefully they will do so when they are able. It is important for you to understand that laser resection of your lung mets is unfortunately not a permanent cure, and although Dr. Rolle is able to laser resect all of the mets that he is able to see on the scans and physically feel, there remain microscopic ones which are too small to be seen or felt. Laser resection provides just another very important tool in trying to manage and control this very challenging disease until a permanent treatment and cure can be found.
Take care Larry, know that my continued most caring thoughts and very best wishes are with you, and keep in touch with the Board as you are able.
With deepest caring, healing wishes, and continued Hope,
Bonni

[Ivan]

Larry, you should send your scans for review to Dr. Rolle. Then you will know if that option is available to you.

I would certainly do surgery upon surgery before starting any systemic treatment.

[Olga]

Larry, if your case is resectable, I would go for the laser assisted surgery in Germany first and to keep the systemic treatment option with the TK for later as you most probably need to use all the treatments available at some point so it is beneficial not to loose any available option. I mean that the surgery option is only temporarily available (if Dr.Rolle takes you) now until the mets grow into something that would make the surgery not technically possible so if you go on TKI now and they stop working later and some mets overgrow the size optimal for the laser - you can not have the surgery then and are going to be left with no practical solution. If you go for the surgery now, the chances that there is going to be incomplete resection are high but the mets grow slowly and it is going to buy you the time - few years, and you can still have TKI or whatever is going to surface by then. If you get lucky, the number of residual mets might get down to the single digits and you can have them ablated - as Ivan now has, he already had 2 ablated and is going to have the third one ablated with no open surgery and I have to say it is awesome quality of life - to have 1 ablation in a year with no other treatments. He lives the normal life.
Laser assisted surgery is the most lung tissue saving type of the open lung surgery, it keeps as much lung tissue as possible allowing you to live the normal life, to breathe fully. Dr.Rolle is the top thoracic surgeon in Germany and his laser assisted surgery is a very rare specialty and I do not think that it is going to be widely in use here in US or Canada because it is very specific, technically difficult and very time consuming.
It is ultimately up to you to decide what way to go though.
Olga.

[DottyW]

Hello Larry,
I'm sorry to hear that you have been diagnosed with ASPS, especially at your age. One of the fortunate things about being diagnosed at this current time is all of the research being done on systemic treatments. I think that you have taken the best route so far and are wise to take time to think about what your next option should be.
My daugher, Jordanne, was diagnosed in 2009. She had her primary thigh tumor resected at Washington Hospital Center in DC by Dr. Malawer, had her jaw resected at NYU by Dr. Delacure and then started on the Cediranib trial at NIH. She only had lung mets at the time 45+. It's certainly not uncommon to have that many lung mets at diagnosis. I'm flabbergasted that the person at NIH told you they did not know about rebound affects. Since being taken off the Cediranib after a year, initial partial response, then stable then disease progression her tumors have popped up in many places mostly in her bones. After a number of other surgeries, hip replacement, craniotomy and now another femur resection she is possibly going to start on a MET inhibitor in December. The team at NIH has not followed up with her personally to find out about all of the rebound growth. When they took her off the trial they knew that she had mets on her skull that had popped up. One grew to the size of a golf ball in just a couple of months. Praise the Lord that it did not got into her brain. She had that successfully removed here in Seattle in August and they are watching the other tumors in her skull.
One thing that I would recommend is to have your tumor tested to find out what the growth factors are. This might lead you to a different type of systemic treatment. My own opinion is that Brittany has done so very well on Cediranib because possibly her tumors are all highly Vegf.. Jordanne's were tested and positive for Vegf and Met. She went on Sutent for 2 months to see fi it would work. It did have a positive affect on her lung mets and another tumor in her soft tissues. But, unfortunately it didn't really show response in her bone tumors. Her tumors are also positive for MET so whe is going to try a MET inhibitor.
I am not nearly as knowledgable about ASPS as some who have been fighting this battle for much longer. But, then again, I don't believe there are any experts out there. What you will find here and on the ASPS facebook page are some good ideas to try and sympathetic ears. We comfort others with the comfort that we have been given.
ASPS is normally pretty slow growing so you probably have time to give it a few months and see how your mets are growing before making a decision. Don't panic.
Blessings,
Dotty W

[Bonni Hess]

Dear Larry,
I Hope that this finds you enjoying a wonderful start to the New Year, completely recovered from your surgery, and feeling good. It has been over two months since you last wrote to update this Board, so I was wondering if you made a treatment decision regarding laser surgery for your lung mets with Dr. Rolle, a systemic treatment with Sutent or Cediranib as you were considering, or if you are just monitoring your disease with regular scans to try to determine if there is any tumor growth and/or new tumors? Please write to let us know how you are doing when your time and the situation allow. In the meantime, take care and know that special thoughts and healing wishes are with you.
With deepest caring and continued Hope,
Bonni