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Synovial Sarcoma - Online Support Group

An update 5 years later


#1

Hello,
It has been 5 years since the last time I wrote, which I wish I would have continued, but life certainly happens. No excuse. I not only want to be here for things I need, but I have now been dealing with Synovial Sarcoma for ten years. I am a 53 year old female, and started this battle in my neck. Nothing about my statistic were common. I had original 5 cm tumor in between my carotid artery and jugular vein. My distant recurrence was almost 5 years to the day, and metastasis was in my lung, just as they statistically mention! I did great. I has 45 rounds of radiation on my neck in 2007. Because I had a complete removal of my right middle lung lobe, there were no margins, so no treatment. August I will cancer free for 5 years again.
But I am here to say, there are many many bad LATENT AFFECTS OF RADIATION, especially in the neck, and my friends they do not show up for years. I have been dealing with these issues since December 2015. I was told by the original Physical Therapist in the first hospital I was treated in that I would definitely need the physical therapy, and to continue it NO MATTER WHAT THE DOCTORS SAID! I was younger than, I had never ever had illness before. I did not listen to the Physical Therapist. I listened to the Internist of the hospital I NO LONGER GO TO! (They also missed my lung cancer) Please get Physical therapy right away if the PT tells you too! I have full blown dysphagia (swallowing difficulty), I can barely speak. I had surgery in April to remove a polyp on my voice box, they put a feeding tube in my stomach and started swallow therapy. Because I was 10 years out from radiation, nothing worked! I now had a second vocal cord surgery yesterday (June 26, 2017) I will never get my voice back 100% and do not even know if this is really going to work. I also would like to mention opiate addiction. It obviously is running much more ramp-id i this country than 10 years ago! Years ago there was never a protocol to get you off all the major amount of opiates they give you to get through treatment. I was addicted to morphine for 3 years after treatment and in 2011, I finally got into a treatment program for 28 days to get off it! Today I am TOTALLY CLEAN AND SOBER BY THE GRACE OF GOD, this has helped every-way in terms of chronic illness now! Please write me if you are having any of these type problems! I would really like to be of help to those who are just starting this battle. Especially you parents, I would never ever want my children to suffer what I had. Or if you have very young children and they do not understand what you are going through or what is happening to you, I have been there and understand. My kids were only 5 and 9 when I got this cancer, and their dad passed away 18 months prior. It was a living nightmare!!! Please do not hesitate, I wish I did not, but I have much information on a lot on these particular areas! Thanks you and GOD BLESS all.
Jodie G.


#2

It’s true what you said about radiation. I underwent 33 rounds of radiation on the upper right side of my back and at the time the radiologist assigned to my case never mentioned the long term side-effects of said treament. So, now I am a 24 year old female dealing with Chronic Obstructive Pulmonary Disease (COPD) and have a higher risk of developing breast cancer because of fibrosis in my right breast :confused:


#3

Hi Maria,
I understand. How long have you been in remission. The effects I am dealing with are from 10 years ago. My Doctors never mentioned either. I too have early stages of COPD and emphysema. I quit cigarettes in 1999 but never quit pot until about 3 1/2 months ago. Now I am wondering myself if this is from radiation or the pot. Although you said radiation on the upper back. Do you mind if I ask where you are treated? There may be some things you can do to prevent it getting worse. I am also assuming you have SS also??? Where did it originate. You are only 24. You have a lot more strength than me lol… I was originally treated in U of F, Gainesville, FL which are the ones that told me I did not need physical therapy some not so bright intern there. The physical therapist that I was working with in the hospital warned me to have it no matter what the Dr’s said. At the time I had never been sick and did not know how to advocate for myself. I am now suffering the consequences, that is why if I can help anyone I want too! I am treated at MD Anderson Cancer Center, Houston. I have one of the two leading Dr’s in SS in the country. The other is at Sloan Kettering. I have been there for 5 years. I probably would have not made it if I did not switch there. I just had this throat surgery yesterday at the University of Colorado. Very good Dr and not a cancer issue. I am still followed very closely. Every 6 months. Please tell you a little more about your situation. How did you do with meds after? That hurt me a great deal to my recovery, I got addicted to the morphine for about 3 years. I had to go to treatment in 2011. It took a big toll on my neck because it made me so stiff, morphine chemically tells your head you are in more pain than you are thus causing more stiffness etc! Anything I can recommend to help I am here for you. It is a very lonely road, most Dr’s you come across are more interested in knowing about SS than in you. I also did not know at the time to ask, but my oncologist in Gainesville was a STATISTICS oncologist so I was like the jackpot for him. I know and understand so much more than I did than. Jodie


#4

Thanks for sharing your experience Jodie. All treatments we go through can have long term side effects, more or less nasty and they don’t affect everybody the same way. There seems to be a price for surviving. I had radiation on my right lung in 2008 and a few years later got a breast cancer on my right breast. Of course I blamed radiation for it but who knows? My oncologist told me it could also be due to chemo.
Regarding opoids, I don’t remember being prescribed any for my amputation even though it was really painful. They gave neurontin instead which is supposed to alleviate phantom pain but didn’t seem to work for me. On the other hand, they pushed opoids after every lung surgery I had. They are always concerned that pain may prevent a patient from taking deep breaths and cause pneumonia as a consequence. I can understand the point but I have another take on this. I think the drowsiness from coming out of anesthesia is what prevents the patient from taking deep breaths and since opoids cause drowsiness as a side effect, I feel they are counterproductive. I took percocet after my first lung surgery but quickly stopped because I had side effects I thought were due to it. It turned out the side effects were due to something else but not taking percocet was not making any difference for me so I never took it again.


#5

Hi Elodie,
How have you been? I agree that everyone’s side effects are very different. Unfortunately with regards to opioids with the first and only radiation, I did not know any better as it was 10 years ago and had no clue how it was going to effect me. I had never been sick a day in my life. I wish so much that I would have been given a lot more information about all of the effects of drugs, long term effects of radiation etc. it is such a hard situation. I think for all of us. I also have early stages of copd and emphasia and haven’t smoked since 1999! Although I was a pot smoker until about 3.5 months ago and thought that is what it is from. But someone else just mentioned that they too have COPD which she thinks is from radiation? So now I wonder? I can’t believe the kind of trouble I am having with my throat and neck 10 years later. I just had 2nd surgery on my vocal cords in 2 1/2 months both vocal cords have polyps popping up. I can barely speak and was diagnosed with dysphasia, I just had them remove a feeding tube from my stomach because it made things worse. I still don’t understand at this point why they don’t sit the patient down in these cases, and explain the long term effects, they do know these things will happen now. I never had any of my doctors explain this to me? And I don’t think many other patients are told either. Why is that??? Now your breast cancer makes me nervous to think about breast cancer possibly, I had a complete lobectomy but no treatment. I just wonder what more will happen in the future ??? Hope you are well! Jodie


#6

Unfortunately, knowing about the potential long term side effects only makes decisions more difficult and raises the level of anxiety. It’s not like there was an easy fix or efficient prevention methods. Hopefully one day research will find a way to cure people without side effects so future patients don’t have to go through this…


#7

Hello
How have you been… Hope all well
In a similar situation for my son just finished RT on his neck. Please assist me about the long term side effects that you know about
My son 11 yrs complaint that he don’t get the food taste and that he’s having pain while swallowing
Please help


#8

I am sorry I have not been on the site for a very long time. Please let me know if I can still assist to you somehow I have a full blown Dysphasia


#9

Would like to know about your diagnosis and how you feel now
Do you still have side effects for the radiation therapy you had
my son has a very similar situation, hence my curiosity

Thanks for your time


#10

Good morning,
How is your son? And how are you holding up? My news is not going to thrill you. I have just come back from 6 years scans and I have a spot in my lower middle lobe, that is cancer, but not synovial sarcoma thank goodness. That is the first thing to tell you. I was so shocked when they told me it was not SS. I was always prepared it might come back, but it really through me for a loop that it is not SS. They do not know yet what type, but very non aggressive. They are not sure, but they did say, yes it could be a side affect from the radiation. I go back on Sept. 6th for testing and if I can have another lung surgery, they again, are going to just take the entire lobe, although, that is a bad side effect. I will be missing 2 lobes on the same side. They say I might be on oxygen because of my already diminished lung capacity. If I am not a candidate for the surgery than that it would be Plan B, Chemo which I don’t want. Unfortunately it is smack in the middle of the lobe, so either way they go, I will have diminished lung capacity.
So this could be another side effect of radiation, but through the last few years I have had an awful time eating. I was never given physical therapy on my neck after surgery. I am prone to scar tissue and adhesion’s (known from past surgery). Because there was no physical therapy done, the scar tissue and adhesion’s adhered to my pallet making it very very difficult to eat. I had a feeding tube last year, and two vocal surgeries, another side affect. Had a polyp on my voice box that they felt was not cancerous but had to take out. Than also I became e phonic (could not speak almost at all) so I had another surgery on both vocal cords to fix that. But they said it will keep coming back and it is alittle over a year and my voice is going again just like they said. We also tried swallow therapy. The swallow therapy did not work for me. I was too far out from the radiation to reverse anything. The biggest fear is that they felt I will aspirate, and as the years go by it absolutely gets worse. I drink a lot of boost.
I hope this helps, please feel free to ask anything else you like. Where is your son seen?
My prayers for your son, you and your entire family.
Jodie


#11

Thanks dear for the detailed note. My son is fine but I’m always worried reading others stories that SS comes back.
Aren’t there any case where SS has never returned.:unamused:


#12

My son had a pet CT done last week , he’s very fine. It’s a miracle!

All good so far


#13

Hello everyone. I’m writing on behalf of my husband who isnt as fortunate. Earlier this year we learned his cancer is back in his lungs and they are giving him 12 to 24 months. Malignant neoplasm metastatic to lungs. He is now going on his second round ofa chemo pump on October 1. After that they will have him come in for a CT SCAN and see if the tumors shrunk. If they didnt the doctors mentioned something about a pill form of chemo and finally a study. We are running out of time fast. Does anyone else have any other suggestions?


#14

My daughter also has it in her lungs pretty bad :frowning: She did the clinical trial with the Tcells, didn’t work :frowning: did the Optivo didn’t work :frowning: Now she is on trabectedin(Yondelis) She is doing her 2nd treatment next week. God willing this will shrink the tumors. She started this horrible Journey in APril 2017 a week before her 20th Birthday. They started with Ifos/Doxi, Tumor removal from thigh then More Ifos/Doxi and Radiation. In November 2017 she was NED and then it came back in February 2018 with a vengence in the lungs. This cancer is relentless but we will keep fighting the fight!! I constantly check the trial website for different trials available. Because she is now 21 she can be treated as a child or as an adult. Bless you and your family and your Husband!!! Keep Fighting!!!


#15

My husband is doing the yondelis right now too. He goes in one more week for his second round. Can you tell me what website you check for studies? Thank you.


#16

I believe the website for clinical trials is: https://www.nih.gov/health-information/nih-clinical-research-trials-you/finding-clinical-trial

Yondelis is kind of a hail Mary for sarcoma. I did a trial, it didn’t work at all, but it only lasted a month, and the team that did the trial also was doing my care. They were more concerned about me as a patient and a person than their trial. When it didn’t work, they intervened immediately. This is important in choosing a trial. You want a center that has great cancer care as well as the trial you’ve chosen.


#17

Hi,
U can try doing a genomic testing. This will bring out what gene is exactly mutated. The report also will say which drug will work. I did this for my mother . She was given two medicines. Both were unrelated to sarcoma. One was for breast and another for skin type. She has to take this as tablet not as chemo. This week planning to meet the doc to understand more. The market leader is foundation one in us. You can try google genomic testing for sarcoma.

Raja


#18

We actually had the test done but it didnt come up with any other options. Right now if this pump doesnt do anything they are giving him a pill option and then any study at froedert that he would fit into. The tricky part about that is my I esurance doesnt cover that hospital.


#19

I, too, had the Foundation One testing. Although they found 4 mutations, there are no known targeted drugs for those mutations. Sarcoma in my pelvic area. Had 2 previously removed and now that it has come back, surgeon said he can’t operate again. Tried radiation which shrunk tumor but within a month grew back to it’s original size. Next I had embolization to cut off the blood supply to the tumor. After a month the tumor had not gotten any bigger. Go back for another CT scan in December to check size. Don’t know if you can have embolization to a tumor in the lungs. You might want to ask that question of your doctor. A vascular surgeon does the procedure after first having a CTA scan to locate the vein feeding the tumor.


#20

Thank you for the information. This is so scary because it seems to goes so fast.