Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi all--

This is Anthony's fiance, Kim. We are having one heck of a time convincing him to eat. So, I was wondering if any of you encountered this issue and what you did to combat it. We are considering non-conventional methods next. Did anyone try these and how was the outcome?

Thanks!

Also...here is Anthony's Caring Bridge website which has pictures...tells his story...etc: http://www.knockindownasps2011.com/ourstory.htm

Hearts!

Kim, I wanted to answer to this question and to comment on your post in the clinical trials topic:
You said:
"We will be meeting with Dr. Makie at Sloan on Friday. Also, we meet with Dr. Schrump today and he confirmed that the removal of Anthony's primary should not be our current priority. His cough gets progressively worse each day and his lung mets are growing...so he expressed that it should be our only concern is to get those under control. So I think I'll stop that fight for now and concentrate on the lung mets."
You need to address these problems on the meeting with Dr.Maki at the MSK on Friday - the cough and the appetite as they need to be treated and there are medication that can be prescribed to easy these problems. I think that if there is an obvious reason for the cough that is seen on the CT scan - some very big met (mets) that pushes on the trachea for example - the radiosurgery (narrow focused radiation treatment) or the cryoablation or tomotherapy (radiation treatment) can be done for that single met or a few mets, it is probably not available in your local hospital so ask Maki. It can buy a time for Anthony to be able to participate in the trials. No clinical trial will probably be able to get growing lung mets under control fast enough to really help him and you need to address this problems first and start a clinical trial after. Dr. Schrump is perfectly aware that there is no magic bullet for the ASPS lung mets regardless of where do you get the second opinion and my point is that the unresected primary will stay in the way of the resection for the lung mets - the only procedure that could help Anthony fast. I would ask about the lung surgery at the MSK on Friday anyways and also ask Dr.Luketich who is done a few very complex ASPS pulmonary metastasectomies http://www.ctsnet.org/home/jluketich if he might want to review the scan knowing that the primary is not resected but the brain mets are controlled and the quality of life is very impaired now.
Re. clinical trial - the cediranib (AZD2171) looks promising but I do not see it available anywhere in US for our case - solid tumors or sarcomas, only at MDACC in the combination with the Avastin (http://www.clinicaltrial.gov/ct2/show/NCT00458731) but they only accept their own patients on the trials.
There are marijuana based drugs to increase the appetite but it needs to be prescribed.

Olga--

Thank you for your reply. Anthony is actually meeting with a surgeon here tomorrow to talk more about the possibility of taking out some of his tumors. Or what we need to do to get ready for them to be operated on...e.g. what our goals should be. So that's good!

Also, we have started taking meganase (breast cancer medication) to increase Anthony's appetite. It's kind of working...he is eating much more. So that's good! thank you again!

Also, we are considering using Sutent to decrease the tumors to possible operatable size...i don't know if that's a word

Sincerely,
Kim

FYI,

'K' was on Sutent for 4 courses (or about 6 months) - it does change your taste (we often found more about side effects of Sutent on the renal CA forums - its a more common cancer). Food taste flat and she wanted really salty foods. I guess that' common. She really got into bacon, beef jerky and the like. Her taste came back after she was off the drug.

Hi All--

So we finally talked with a sarcoma doctor at the U of M - Dr. Skubitz. Dr. Skubitz has immediately put some things into action. Anthony will be getting a blood transfusion on Thursday and will commence radiation on his primary this afternoon. His primary is in his calf/ankle and is limiting his ability to walk. So Anthony has decided to get 5 treatments of radiation. He will then start Sutent on Thursday. He is also now on Megnese to stimulate his appetite.

Our biggest concern is the possible stint operation. The doctor seems to recommend it, but continues to tell us about all ther risks. Which to be honest and frank...scares the sh*t out of me. But whatever makes Anthony a happier person - I'm all for.

So...just wanted to give you an update. I hope all is well with everyone!

Sincerely,
kim

It is called a tracheobronchial stent, used to widen airways suppressed by the lung metastases, it is a purely palliative option that is used when other options are not available but I do not see that you have explored all of them - some of them are much more effective and can provide him with a long lasting relief and improved quality of life. The thing is that it will prohibit the other options to treat this pressure - the cryotherapy, tomotherapy or radiosurgery can be done for the single or a few bigger metastases that suppress airways. Have you consulted Dr.Littrup regarding the cryo? He is in Detroit and we have very positive experience him treating troublesome metastases when surgery is not an option. I would also consult Dr.Luketich re. decompressing surgery, it will given an immediate relief. I know cases when he was accepting people who were on the respirator for month and they could breathe after.
You do not need a referral, contact these people directly:

Surgery - http://www.ctsnet.org/home/jluketich
cryo -http://www.karmanos.org/profile.asp?id=372
radiosurgery Novalis - Paul Okunieff, director of the Robert J. Flavin Novalis® Shaped Beam Surgery™ Center - http://radonc.urmc.rochester.edu/novali ... enter.html or http://www.urmc.rochester.edu/directory ... ov_id=4189
Do you know what is the cause of the compression, what is the size of the biggest metastasis. When was the last CT scan done, to get a consultation from these guys you need a copy on the CD (after you ask them).

All we keep hearing is that they can't operate. When we talked to Maki, I asked about removing some nodules and other thing that we could do to remove some and all they kept saying was that we need whole body treatment and not just lungs. Anthony is wheezing horribly and can't do much - so they thought this was the quickest solution. The airways are greatly closed on one side.

Thank you sending me this information. I'll talk to Anthony about it. Thank you and have a wonderful day!

When you talk to the oncologist, he is usually concentrated on the systemic treatment issues. If you want to get a real surgical opinion, you should talk to the surgeon directly.

Olga--

We talked with Anthony's surgeon and he noted that the Stent would actually not provide him with an overall benefit in the end. Apparently it is on a nodule that wouldn't enhance his breathing that much and he would be guaranteed to be put on a respirator. So, we will not be doing that.

We did ask on the other three items that you mentioned. The first two cannot be performed as Anthony's mets are too close to other organs and would wipe out a majority of his lungs. Can you provide me with a definition of each? Just to make sure??? Also, do you know any doctors that perform the radiosurgery? I believe the first two were actually performing surgery and it's too abvasive for Anthony to do - according to all of this doctors (this was similar with Maki and Schrump).

Thank you so much for your help! Sincerely, Kim

Kim - I did provide you with the names in the links in my message above. You need to ask them about their modalities and not the local surgeon. He obviously gave you the statement in regards of the surgery - Anthony's mets are centrally located and can not be resected using the regular stapler assisted wedge resection as in order to do that they will need to cut most of the lung. That's why we and other people here went to Germany to have the surgery by Dr.Rolle using laser - not to resect it by wedges but to do a laser assisted metastasectomy. There are many cases when he is not able to do his type of resection as well, esp. when the mets have overgrown the size. I believe Dr.Luketich still did some of the resection in the situation like this manually (cherry picking). The other tow modalities - cryo ablation and radiosurgery - are not from the open surgery area but from the local ablation - when only one or a few unresectable mets are treated. To evaluate if it can be done you need to consult Dr.Littrup re.cryo and Dr.Okunieff re. radiosurgery, our community has a positive experience with both of them. The answer from the surgeon if it was negative was really outside of the area of his expertise, these modalities are not widely available and require an unique skills/experience.

Hey Olga!

I have just emailed Dr. Luketich and Dr. Littrup. I hope they respond. Last night, Anthony had to sleep in the tripod position to help him breathe. I really hope they respond soon. I'll call Dr. Okuneiff over lunch to see if he can help.

Thank you!

We'll be praying for Anthony.

Sutent has resulted in some ASPS tumor shrinkage (presented at last ASCO I think). If it can reduce the size of Anthony's tumors now perhaps it will allow you to look into other options. Be aware he will probably have to go off the Sutent for surgery or for interventions like cryo or radiosurgery - because of the bleeding risks. I think the beneficial effects of Sutent can be seen relatively quickly, but often that means within 3 months or so. PET responses can be seen within 2 months I think. One of the patients reported at ASCO had an improvement in his breathing.

It sounds as if you are investigating into all options. Also I hope you know that though we suggest things, there are some things we on the forum we can't give you advice on - because ultimate decisions about what to do often depend on the particular location, size, and anatomy of where Anthony's tumors are (surgical decisions). and so we cannot really easily compare one person's experience to another's. You are in touch with good physicians / experts and it seems as if they are in fairly good agreement re: his immediate plans.

Fortunately for the patient and his caregivers when we are getting the second opinion from the experts from elsewhere they will review our ideas and situation and then they decide if they want to proceed so we are not doing what is inappropriate and damaging. We are here what we a re - the support group and information exchange - who did what and with what result. When getting the second opinion, do not forget to include the current treatment plan details so they can compare their options with the possible benefits the current treatment can provide. If there is no treatment plan what so ever it worth mentioning also, along with the description of physical condition of the patient and extend of his disease.

Hi Everyone!

thank you for the notes! Anthony is now on oxygen - which seems to be helping. His foot is horrible swollen. I did talk to his radiation oncologist today about Gamna knife, cyber knife and radiosurgery. He said our biggest problem is that AJ can't lay down (it causes him to not breath, cough and weeze) so he believes they are not an option. But I'm still waiting for the other three doctors to call me back.

I'm down for doing whatever will help cure my loving and dear fiance. So thank you for your opinions...hope all is well!

Sincerely,
kim

Hey all--

I hope the Holidays are treating you well. I thought I would provide a small update in case some of you don't subscribe to Anthony's Caring Bridge page. Anthony is doing much better. He has found a renewed love for Legos! It's kinda cute to know that what comforted you as a child is the first thing you turn to when you aren't well.

Anthony is still on Oxygen and has lost 90 pounds. However, within the last two weeks, he has gained two pounds. He has been eating every hour no matter what it is he can stomach and his energy has increased. He used to sleep about 18 hours a day - now he sleeps maybe 10 if he's not feeling well. His coughing has almost diminished. He has reduced the amount of anti-cough medications he takes. He is on a steriod and blood pressure medicine (to reduce any potential affects of the sutent).

He is still taking Sutent. He is on a dose that does not do Cycles. This was at the direction of Dr. Maki at MSK. Aj will have his next scan January 19 with the results on the 20th. We are nervous but there are several signs that point to it working. Here are some of the signs:
1. His coughing has diminished (knock on wood).
2. The first time we went to AJ's new doctor (Dr. Skubitz at the U of M), he could barely stand and hold his hands out....he can do this for several minutes now.
3. He CAN lay down. He's been laying on his side. In October, he sat up for the whole night.
4. He just looks and feels better.

So, we are staying positive and knowing that if we keep hoping and praying and leaning on others, that tables will turn at some point. We both wished for this cancer to go away and have a cure for Christmas...well we are getting married December 5th and hope to celebrate his cure! So Santa has one year to pay up!

I wish nothing but the best for all of you!

Sincerely,
Kim

Also, if you would like to donate to ASPS research - our lovely friends have organized a fundraiser and have found a worthy cause through Yosef...which I believe is the ARQ-197 trial...but anyway, here is the website if you would like to see:

http://www.knockindownasps.com/

Hearts and hope,
Kim