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Synovial Sarcoma - Online Support Group

Thigh SS with lung mets


#1

Hello everyone,
My name is Muna. Im 33 years old from Oman.I already finished 3 cycles of chemo.( Ifo. & Dux. ).My tumor is 13cm located in the left pelvic area.Doctors told me it is difficult to remove it at this size because I will lose my ability to walk like before.My last scan showed that some of the lungs tumors disappeared and the rest decreased in size about 50% and they calcified.After tomorrow will be my fourth chemotherapy cycle and I feel really scared. What if the big tumor is still keeping its size!!

I was looking through the Internet for any support group and I found you here finally some one with the same problem! I hope you all be fine and your treatments go well with good results.


#2

How many chemo cycles are you supposed to do, 6? I hope it keeps working. Have your doctors mentioned radiation?

Good luck!


#3

Doctors said they will give me 4 cycles and 6 if the respond is slow. So I think they will be 6. Radiation will be after surgery as they mentioned. Thanx alot (:


#4

Muna, I pray you have a full recovery,
And that your tumor shrinks quickly so the additional treatments will not be needed.
Rebecca


#5

My advice to anyone with lung mets is to be aggressive! Use everything at your disposal. Surgery, cyberknife, Radio Frequency Ablation, any procedure that can eliminate the mets from the lungs. I think there are developing treatments that show some promise, but the only established way to beat this cancer is surgery.

I hope that doesn't discourage you. I've read of many cases where patients had to have multiple surgeries, but ultimately beat the cancer by just keeping after those little buggers! In my daughter's case, the tumors got too close to her heart and there just wasn't anything more the doctors could do, but I felt like we had some opportunities to get at them and missed them due complications caused by our insurance (they forced us to use an imaging facility that was not able to upload to the hospital, so we were forced to deliver CD's to the doctors and during one surgery the surgeon missed a tumor because he didn't see that latest scans).

My best to you and your family. You can beat this! But you have to really stay after it.

-james


#6

Thank you all. Im on my way to the hospital to get my next chemo. I hope it will be the last one.
James, your advices are very valuable and I will try the best I can to beat this cancer.
Surgery in my case is not an option yet but its good to know that many of those small spots in my lungs disappeared.My doctor said this chemo. may be enough to clean my lungs and I really want to believe him.
I have a little daughter ( 2 years old) and I can’t imagine leaving her alone in this world at this age.


#7

James is right about surgery being the only established "cure". But your case is complicated by the fact you still have your primary tumor and mets in the lungs at the same time. Usually, surgeons refuse to surgically remove lung mets if the primary tumor is still there. They may agree to remove the tumor in the pelvis if they think the lung mets are small enough and stable enough. I am guessing that's what they are trying to achieve with chemo.

It's hard when you have a little one. I was diagnosed just after my son was born and he was an incredible source of motivation. I know you will be as aggressive as you can with the disease...


#8

Hi all,
I met my doctor today and he told me that next time after 3 weeks they will do a new scan and check if the tumor shrink enough to be removed by surgery they will go ahead and they will remove both the pelvis tumor and those little buggers in my lungs. After that there will be radiotherapy for sure but chemotherapy will depend on my pathology results and how my body is responding to it.
He said this will be a very long and difficult journey and I have to pray for God to make things go well and nothing new comes up.


#9

This sounds like a good plan. I hope your next scan is good enough so you can proceed. Good luck!


#10

Muna,

I too have the Thigh tumor SS and it has sread to my lungs. I start my Chemo ( Ifosfamide / Doxorubicin ) Tuesday

10/27/15. My tumor is 25cm on the inner part of my thigh. I hope all goes well with your treatment, I too will pray for your recovery. How did you handle the Chemo? Was there side effects for you? I will be going through the same treatment as you and was just curious. Thanks, and keep fighting I am pulling for you.


#11

Hi my friend,
Let me tell you my story with side effects. The first time will be the hardest one and I’m not saying that to scare you but to tell you that everything else comes up later will be easy to deal with unless you have other health issues . Before you go for your treatments drink as much water as you can and take care of your diet be as much healthy as you can. I’m trying to eat organic food and stay away from fast food too .
In my first treatment I felt very much sleepy and tired, my tongue turns white because of inflammations which spread very fast to my digestive system. They gave me medications for that. So anything you feel just tell your doctor. Also I was unable to eat and vomited if I tried. They also have medications for that. Smell of food and taste were very bad, you can try cold sandwiches, ice cream , juices, and don’t forget to drink water to clean your body from chemicals as fast as possible. The Dox. was burning my body each time at the beginning you may feel that but don’t worry you can deal with that and it will go after you finish. The urine will be pink after that for one or two times , this in not important . Im taking MESNA with Ifo. to protect my kidneys . You can discuss this with your doctor.
That feeling will go away with the last drop of chemotherapy . You will need some one to take care of you and drive you home . I usually take my immunity injection 2 days after that.
First time I felt very much tired , had pain like I’m having a flue, my appetite was going down for almost a week. Try to eat to help yourself please and I’m still using paracetamol which helps me alot to stop pain and discomfort . Also my doctors advice me to use some natural supplements like wheat grass powder if you like but do not use multivitamins. Get your vitamins from fruits. Eat small meals and keep yourself away from crowded places and sick people . If you had any symptoms of infection call your doctor immediately .
Im working for the government so I took along sick leave for 5 months and I will see how things goes on. You can manage your life to fit your new condition. Keep yourself happy and stay with positive people. You will need support. I start loosing my hair after the first cycle and become bold after the second one . My skin turns darker and my nails form white lines. I was shaking some times and lost my concentration, had a blurd vision, sleeping difficulty , depression and anxiety . I still have these problems until now.
Your next times will be easier it looks like I’m taking normal saline water.
I talk too much but please if you need to know anything you can ask. I hope we get better soon. Keep yourself up , there are many people in the world like us. We should fight my friend .

Muna


#12

Muna,

I have finished first round of Chemo and yes it was rough. I had nausea that the were able to help with Phengren ( SP? )

I was given pain meds, as the tumor in my thigh was "pinching nerves" . I went for nulasta shot, today to help with red and white blood cells. I hope your tumor has responded to the chemo and that your lung mets also have responded well. I am praying and hoping you beat this!!! I am pulling for you and look foward to next post on progress


#13

Perdido,

Im still here :slight_smile: . My next scan is after few days. Im praying for a good respond this time.
I hope you the same and I will pray for that.

Im thinking to travel out side my country to get a second opinion but I don’t know where to go. Surgeons here had no experience with sarcomas.

Muna


#14

Muna,

My oncologist is from Egypt and works with MD Anderson out of Houston. MD Anderson has a great sarcoma

Dept. I live in Florida but they are connected via web/phone. If you can go, Try the Main unit in Houston TX

They have new therapies for the lungs.They have the Proton Therapy Center. Check it on the web @ MD Anderson.org


#15

Hello there Muna!

I also have a tumor on my left pelvic area! but mine was 22 cm when it was diagnosed. I also had some small mass connected to that and 5 lung mets. I already finished 6 cycles of ifo/doxo, and I just have one lung met left! and it became smaller (it's still big, though, but there is a lot of tumor necrosis), but they will give me the results of the last CT and MRI that I did soon. Next I am probably doing some radiotherapy to try to reduce it more to have a surgery with clear margins. Also they told me I could lose my ability to walk like before, just like in your case, so they are also trying to prevent that from happening with the surgery. This week they will tell me what we will be doing next. :P

I hope everything goes well for you! :)


#16

Hi Rnem,
Im so happy to find someone like me :).
My next chemo. will be after 5 days from now and yes it is number 6. My last CT was good, the primary tumor shrunk to 11 cm and one of my lungs was clear . That was after cycle 4 so I hope my next scan will be better.

I wish everything goes well for you too :).


#17

Hi all,
This is an update. I finished my chemotherapy and all the lung metastasis dissappeared. Also the primary tumor shrunk enough for the surgery. My surgery will be at the beginning of January. My doctor said that I may not need radiotherapy if the surgery went well.
I need your advice in this case and what should I do after surgery? It is scary to think that it may come back!


#18

The first thing you should do after surgery is get the pathology report and the operative report. Then you can get a second opinion...

Muna said:

Hi all,
This is an update. I finished my chemotherapy and all the lung metastasis dissappeared. Also the primary tumor shrunk enough for the surgery. My surgery will be at the beginning of January. My doctor said that I may not need radiotherapy if the surgery went well.
I need your advice in this case and what should I do after surgery? It is scary to think that it may come back!

#19

I was happy to see this post. My 14y daughter may have metastasis on the lungs. Can you tell me how large were your lung nodules? It has been a while since your posting so I hope you are still clean.