Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I have some more details from the pathologist regarding Sree's primary.
There is spotty necrosis, confluent large areas of necrosis was not observed (could that mean that the necrosis was not spontaneous and was infact as a result of the chemo ?). Nucleoli mitoses was sparse inferring that its very slow growing (maybe that's why chemo was not very effective) . The overall % necrosis was very minimal !

Our search for a lung surgeon and a systemic treatment for Sree continues..

Looking at all this, 'F''s observation on metronomical chemo makes a lot of sense to me. Maybe combined with a anti angiogenic agent, it might be an option we will consider.

Have not done anything about the molecular profiling yet.

Hello Arch,
I will be starting radiation also on 4/31. I think you said that he was about to start radiation also. Let him know i feel for him and will be doing the same and if he wishes to post any tips for the limb feeling better i would love it. I shall also post if i find any thing that helps
I was told that there is a special cream and that i must get it before they start the radiation. I hope that his doctors also give this to him. I will be doing seven weeks five days a week all low dose. I will post what he is using and the dose in my update area after I see the doctor on the 31st.

All the best to Sree and oyu and the family

Amanda R

Hi Amanda,

Sree is getting 45Gy dose of radiation for 25 days(5 days/week for 5 weeks). Our doctors have told that there will be some discolouration of his skin locally which is reversible after the treatment. He can continue all his regular work, shower, regular food etc. No cream for external application is prescribed.
He has finished 2 days of radiation and he doesn't feel anything different. Anyways, our bigger concern is his lungs. He has multiple, bilateral lung mets.

Ever since the dx, he has stopped taking sugar and refined carbs(white bread, white rice etc). He drinks green tea instead of coffee. We even otherwise eat healthy food, lots of veges, fruits etc. I don't know how much it will help, it wouldn't hurt anyways.

All the best Amanda and take care.

Hello Arch
I am glad he is doing well! I do not know what my dose will be but i will post it next week. It will also be five days a week but he told me yesterday it would be for seven weeks. The crean helps with the skin i was told and i will post the name of it next week also

I also do not eat sugar and no caffine and a LOT of vegies steamed. If he likes his tea sweet add organtic cold pressed maple syrup it taist just like sugar. Eating does help i think and i will tell you why. Are bodies are under so much stress between the diagnosis and the treatments that we need good food to keep up are streangth. I love green tea and i drink that also but decafinated. I miss Starbucks, lol I am going to be in the morning starting on Flax seed oil with cottage cheese and it is confusing because it has to be mixed a certine way. I was reading about Flax seed oil and then when i saw the doctor about my having cancer he said he wanted me to eat the breakfast that they had in the diet. I will let you know how it is and if it is gross, lol

All the best to you and Sree and your family!
Amanda R

Hello
It has been a little while and i was wondering how Sree was doing and how you are holding up
When you have time post back and let me know.

Amanda R

Hello

Sree goes for his radiation sessions everyday, its been ok so far, he drops by after work and its all done in 5 mins. The radiation itself would be for a much shorter time, maybe less than a minute everyday. We still wonder if its really needed with the clear margins..but anyways, he's going for it.

The other development from our side is that we've decided to go to Dr.Rolle in Germany for a laser resection of his lung mets. Dr.Rolle is going to get as much metastasis out as possible, it may not be a full resection because of the numbers. We are leaving for Germany on the 3rd May, surgery should be on 6th or so.
I will keep all of you posted on how things go. I would love to hear any tips or bits of advice from anyone who has been to Germany for the surgery.

Arch

Hello Arch,
How is he doing on the radiation now? I am starting to get very sleepy from it and also my leg is starting to hurt.

I am so glad he is going to see this doctor for the lungs!
He sounds like an amasing doctor and has done so much for others.
I wish you both a wonderful trip there full of healing and swift recovery.
Please, post back when you can

Amanda R

Arch wrote:Hello

Sree goes for his radiation sessions everyday, its been ok so far, he drops by after work and its all done in 5 mins. The radiation itself would be for a much shorter time, maybe less than a minute everyday. We still wonder if its really needed with the clear margins..but anyways, he's going for it.

The other development from our side is that we've decided to go to Dr.Rolle in Germany for a laser resection of his lung mets. Dr.Rolle is going to get as much metastasis out as possible, it may not be a full resection because of the numbers. We are leaving for Germany on the 3rd May, surgery should be on 6th or so.
I will keep all of you posted on how things go. I would love to hear any tips or bits of advice from anyone who has been to Germany for the surgery.

Arch

Hi Amanda,
Sree's radiation is completed, he didn't have any systemic side effects, only local skin reaction like discoloration, dryness and slight burning. All the best with your treatment.

We are all set for our Germany trip. Hope everything goes well. I will keep the forum updated as and when possible.
All of you take care.

Good luck in Germany. Hopefully you will enjoy the same great weather we had there.

Dear Arch
Continuing to keep you both in my thoughts and that the surgery went wonderful and that he is healing up well
From what i have read in the forums it sounds like a beautiful place to recover.

*Hoping for a happy news post soon*
Amanda R

Hi All,

Surgery was done on the 5th May, 100+ mets were resected. He#s recovering well, had some issues with air leaks initially, but he is fine now. Rest later.

Arch

Arch, thanks for the update. Do not forget to ask about the pathology report content - you need to know if there is any treatment induced necrosis in the nodules with correlation to the range of size, so you can figure out if the chemotherapy would need to go further after you're back. Also tell them that you want to have non-stained blocks with the tumor to take it with you home just in case you'll find how to use them later, it turned to be a really no-problem thing to cross the borders if it is in your luggage, as there is generally no question in the customs form that would apply to the tumor blocks.

Great to hear that things went well for Sree. It is nice to leave all those tumors behind!

With blessings to you both,

'F' & Co

Any updates for us? I am glad he's doing well.

Hi All,

We are back home after the surgery in Coswig. Everything went well, the surgery, recovery, stay there and the flight back home.
We did enjoy the great weather and it was a beautiful place to recover.

We are quite impressed with these guys, it was such a great surgery(Prof.Rolle removed 112 mets), their pain management was excellent, the care they put into his recovery, physiotherapy, all of it was good. Sree did have some complication because of air leaks 1 day post-op and so his stay in the ICU was a little longer than expected. Chest x-rays done later confirmed that they had resolved.

Olga, we did get a copy of all reports and also the blocks. The largest met was 14 mm, there was no necrosis! so I think the 3 cycles of AIM probably had no effect on the tumors. His primary did show some necrosis, but the lung mets did not have any. The bigger lung mets showed some cell division, whereas the smaller ones did not, so we hope that the even smaller ones which might have been left out would grow very slowly. That's our hope. They did a post surgery CT for Sree and the right lung now shows no tumors. We need to go back for the second surgery in 1-2 months time.

We felt quite comfortable with everything because we knew what to expect, we had read about your experiences. Thanks a lot for sharing and helping out.
Best wishes to all.