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Synovial Sarcoma - Online Support Group

Sarcoma


#1

Good evening everyone. This is my first time doing this. My husband and I married on October 31 2014 bought a home and about a month later found out he had synovial sarcoma in his right foot. Chemo didn’t do anything so he had his right foot amputated below his knee. He had clean CT scans and clean PET scans for the last almost three years. November 20 2017 was his last CT scan which was clean. Since I had my foot surgery on December 27 2017 he had to clean the snow. His side started hurting and he thought it had something to do with maybe a muscle being pulled. January 20 2018 he went to the doctor where they ran blood and dis an xray where both found nothing. His pain continued and on February 23 2018 he had such a high fever and was in so much pain. The next day he went to the ER where after more blood and now a CT they found out the sarcoma came back. We were devastated. The next day he had to be admitted cuz he had a fever of 102.8 and he looked awful. That Wednesday he was finally released and we really didnt have any answers. Doctors kept saying sarcoma sarcoma but nothing was said in solid. He had his PET scan that Friday and Monday we met with the oncologist and doctor who amputated his foot in 2015 along with his nurse. Never in my life had I heard such horrible news. The sarcoma was back and basically he has anywhere from 7 to 24 months to live with some patients living as long as 7 years. It’s still really hard to accept this information. To be his caretaker is a role I’m really honored to have. I’m scared yes, I’ve watched my 42 year old 5 foot 7 196 pound husband go down to 178 in a month. His breathing is iffy and he moves alot slower. To watch my husband say how sorry he is for getting sick, for putting the burden of everything on me is heartbreaking. No one will truly understand what its like to go through this until it does. We were supposed to grow old together and now I make sure I document every moment, every memory i get to spend with him.
We are having a fundraiser for in a couple weeks because he had to stop working. Im sharing with you my story because i want others to be aware this could happen and it happens fast. Be aware of any warning signs…flu like symptoms pains in the side fever tiredness. I dont wish this cancer on anyone. Any advice or words anyone would like to share I would be grateful. Thank you all for listening.


#2

Hi…

I really understand the pain you are going through now. But keep your faith high and I am sure you both will grow old together. Keep believing and stay positive.

If you don’t mind sharing, where did the sarcoma spread to in the latest scans ? Was it to the lungs or again on the leg? Can they not do chemo again? Or anything else to stop this ?

Regardless keep going strong and you will definitely be fine and happy with your husband. Keep being the strong women you are now.


#3

Sorry the cancer went to his lungs. Chemo will only prolong things and he starts this Wednesday. Do u have a loved one affected by this disease?


#4

First, let me say I am so sorry for you and your husband. I know this is devastating news. My diagnosis was recently changed from small cell osteosarcoma to synovial sarcoma. We found this through Foundation One Heme Tumor Profile test. My tumor originated in my femur so it was not typical presentation for synovial sarcoma. My cancer first went to my left femur. I was first diagnosed 9 years ago. Since that time, it has gone to each lung and my right adrenal gland. The lung tumors were just one each time and they were cut out. I didn’t do additional chemo. Just this last Oct. it went to my adrenal gland and grew very fast. They took it out and I did some radiation to that area. I am in Colorado and have my treatments in Denver. I hope you are at a big hospital perhaps a teaching hospital where they see plenty of this type of cancer. I certainly don’t know what the future holds, but I know you have to get in front of people that are used to seeing it to find out what might be available to you. I too am scared especially with my last tumor which grew quickly in 3 months. I am given CT scans every three months of chest, abdomen and pelvis and my adrenal gland tumor came on fast. I don’t know if any of this helps. I am new to the site, and you are the first person I have responded to. Good luck with the chemo. Is your husband doing Ifosfamide? I keep hearing about Ifosfamide with Adria having some success. I don’t know if that will be my treatment if I end up doing chemo. I have heard it helps some, but I have already done some Adria and there is a life time dose one can have. I have also heard of a clinical trial in Seattle I believe with a vaccine and maybe some immunotherapy with it. I don’t know if it is anything you could pursue, but google it. My best, Judy


#5

hi, i am so sorry to hear your story. First, i wish you and your husband the best. i am a synovial sarcoma patient, it is a very rare one, firstly appearing in a hernia operation as a tumor non attached to anything. From my experience with cancer, i can only give these advises to other patients and their loved ones. No-one knows how much it will take to live or die…i ve seen terminal patients waiting to die in days to come back and “in great” shape ones die in hours…i was one of the cases that all doctors told my husband to prepare my children for my death coming in two months time… three years ago…my lungs are now the center of the appearance of the tumors and we are fighting to keep them small or make them disappear. one of the things that helped me through these years of chemo, operations and votrient therapy is that i constantly take vitamins for my body to be able to cope with everything. i live in greece and the oncologists, that are great professionals, do not advise anything extra as vitamins or any kind of treatment. if this is the case for your husband, ask another doctor for a full vitamin treatment. it might help him as it did with me. my best, fotini


#6

Hi

I myself was affected by Synovial sarcoma. My amputation was last year around this same time. I had chemo after my amputation. My Tumour was 4cm at the time of surgery. Do you remember what the size of his tumour was ?

Regardless like everyone said, no one can decide ones life. Keep moving strong with your faith high. You are in our prayers and I am sure everything is going to positive. Stress can only bring you down. You are brave and believe in it :blush:

Cheers to many many more lives with your beloved husband and all the strong survivors of this wonderful group .


#7

What kind of vitamins?


#8

Thank you for your kind words.


#9

My 15 year old daughter has METS in the lungs but they don’t want to give her chemo yet and the nodules are too small for radiation. They are growing very slow. I live scan to scan, meanwhile we are trying to let her live as normal a life as she can. How big are the tumors in your husband lungs? You said the scan from Nov 2017 was completely clean? Did you go back to look at the scan to see how big were back then? I suspect they may have missed them in the previous scans.


#10

Hello. I’m sorry to hear about your daughter. The mass that has always been in my husbands lungs were monitored very closely. When we started this journey the mass was 3mm and we were told it was to small to test or take out. It was monitored for the past three years and it never grew or anything. Literally within the last month it came back and fast. He is actually doing his chemo right now and his oncologist had showed us his PET scan from about 2 weeks ago and it is all over in his lungs. A lung transplant would not work and right now the only thing they can do is chemo. He is in stage four and with chemo 24 months to live.


#11

His tumor in his foot was 4.8. Thank you for your kind words.


#12

We are at a big hospital. He is doing doxorubicin and olaratumab.


#13

Oh my god. Now I am even more scared. I thought people could leave for many years with those masses. My daughter has multiple of them which we have been monitoring since August. They don’t want to give her Chemo or anything. How big did your husband mass grow from the his Nov 2017 scan until February? Can they take out that half a lung?


#14

i was given by a my family doctor (not the oncologist, but, agreed with me taking them) d3-k2-green tea-c-lycin-lipoic-turmeric and quercetin. of course, these were given to me according to my body and illness, i double checked taking them with the vitamins company and another out-of-the hospital doctor. please find a good professional doctor and you will be given some really necessary and helping vitamins for your husband, too. i pray that everything will be fine and we all will be having long talks for years and years to come…


#15

Ricky that was the size tumor in his foot. The one in the chest was always 3mm. Literary from January 20th to February 24 it grew too about 13cm. It has happened so fast.


#16

Her tumor was ~8mm on her ankle but unfortunately was there a very long time which caused the METs.


#17

Hi there…My husband has Synovial Sarcoma stage 3 and we just found out. How is your husband?


#18

My husband started chemo he is on cycle number five. He goes 1 week on next week on and 3 week off. He had to see a cardio oncologist because the doxorubicin was effecting his heart. The tumors shrunk though so that’s a good thing.


#19

Hi there…I wasn’t sure how long your story was on there. I’m new as of today. Your husband has Synovial Sarcoma, correct? May I ask how long it was before it was detected? Thanks! Heather


#20

Sorry for the late response. My husband does have it. In 2012 we played basketball alot and he thought maybe he hurt his foot because it would hurt so bad. We got married on October and bought our house in December and January he got diagnosed with it. He did a round of chemo and it did not shrink the tumor so we decided to have his right foot amputated. With almost three years of clean ct and pet scans he started feeling sick in January of this year. He went to the doctor they found nothing then February 24 2 days after his birthday he was getting worse went to the ER and they said it was back. We met with his oncologist and they are giving him 12 to 24 months to live.