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Synovial Sarcoma - Online Support Group

What helps you cope


#1

hello i am the sister of teddy and her caregiver. briefly to summarize her lung mets responded to high dose ifos but now her kidneys can't get rid of the bun and creatinine and requires dialysis. some function recovery has occurred but don't know if it will be enough votrient for 4 mos lungs responded but surgical wound rt groin opened up and got larger. she's had surgery on her rt groin nov2011, followed by six wks radiation then ifos. wound almost closed twice but rad and votrient destroyed the fragile tissue. finding it hard to cope and stay strong for her


#2

Teddy is lucky to have you.


#3

It can be a hard and lonely job what you are doing. Do you have anyone supporting you? as that is essential a chain of support.I find when I get overwhelmed I do things that fill me up in order to continue.I draw and paint and write. I garden, Talk to friends. A bit of shopping usually an OP shop as its cheap. Art materials or something. It sounds like its too big for you to problem solve and out of your your realm of experience. There will be someone professional you can talk to as well to get some answers for yourself as you need support as well.Give yourself permission to have a break so you can be there in the way you need to be for your sister.x KAT


#4

Thank you Elodie for your kind words and Kat for your advice. i'm a nurse and i've really tried to not just help her survive, but hopefully thrive. so much of a rollercoaster as you all well know. last year the wound healed up fast but discovered mets to the lungs. lungs responded well to ifos but kidneys went down. lungs responded to votrient but wound took a beating(rt. groin tricky area.) she worked hard in outpt phys therapy and was doing our treadmill in oct 2012. votrient caused her a lot of pain in rt groin but no cancer. i pray for some stability but it seems elusive. i try to have faith but i get so depressed and discouraged. why her, why any of you. why so much suffering? we used to work together, i can't stop thinking about those good old times. i know you all have your own struggles and i probably needsome help but i feel like only this group really understands


#5

I too am a nurse and understand the struggle you are in. We are used to fixing and problem solving and all with a smile and professional attitude..feelings are not supposed to come into it.

I have faith and at times it is a tiny pinprick of light in the dark but it is still there.I guess where I at with faith is that God doesnt give us any more than we can handle and he grows the roots of the tree before the branches so it doesnt topple.But root growing is hard work pushing through clay and dirt and rock and in the dark.

At times this week as things get harder I have felt like a possum in a bushfire barely hanging there. But I am still here and so are you and you are asking and seeking help and that is good


#6

Oh I would cry on my way to my nieces but somehow my body would work it out before I went through that door. It is your only purpose right now, to stay strong for her and I believe you can do it. It is very difficult but she wants you to be there and you cant be anywhere else. No matter the bad and the tough. When she sleeps, look at her. When she struggles, be there to hold her hand. Be her smile, as hard as it can be, you must do that. I sent you an email as well. Stay strong!


#7

Hey Teddy. Much like you, I am trying to stay focused and positive while my husband battles his sarcoma. His radiation/Ifosfamide treatments clearly didn't work as lung mets appeared very soon after he finished treatment. I don't know about you, but I can't stop the loop tape that keeps playing in my mind. The swirling thoughts that consume me, day in and day out. Writing helps. Sometimes I write for myself, and sometimes I send personal emails to my closest girlfriends. I put the swirling thoughts...all the "what ifs" and emotions on paper, to calm my head....even if momentarily. Reach out to all those who love you. Because the emotional support and love to receive back may help to fuel you for another day. Or if you're comfortable with it, write to me and other friends here...anytime. Because you know we understand. Focus on today....breathe...xoxo Jeanne


#8

Thanks to all of you who replied and shared your feelings. i'm always very grateful for your responses and learn so much from the discussions on this board. thanks ziasper i did get your email and jkopetic i just may take you up on your offer. it's funny but it's not; a friend also told me to "breathe".


#9

Jeanne, i was referring on your offer for me to write to you. Again, thanks


#10

Oh Teddy...write to me anytime. My email is: jeannekopetic@mac.com. I find when I am MOST stressed, I am aware of my breathing. As if it has no longer become an involuntary act and I have to focus on simply inhaling and exhaling. I don't know if that makes sense to anyone else but me. : ) Things at my house feel normal at the moment. Dan went back to work and we are busy taking the kids to all of their activities. (That provides a great distraction). Dan will see both his surgeon, and his oncologist, for follow-up visits this week. We'll know more about 'the next step' then. I believe he will be starting Votrient.


#11

Trying to cope with the side effects of Votrient. It is difficult...the fatigue is almost unbearable. My oncologist reduced my dosage just yesterday, taking 600mg. MWF and 400mg on TTH. I was just too out of it; so, i hope this works. If anyone has suggestion on how they are coping, please let me know. Breathing sounds like a wonderful idea!!


#12

what made your doc choose that dose and schedule? i also mentioned cyber knife to my sister's oncologist and he didn't really seem enthusiastic. what criteria qualifies a person for it?

imaFighter91 said:

Trying to cope with the side effects of Votrient. It is difficult...the fatigue is almost unbearable. My oncologist reduced my dosage just yesterday, taking 600mg. MWF and 400mg on TTH. I was just too out of it; so, i hope this works. If anyone has suggestion on how they are coping, please let me know. Breathing sounds like a wonderful idea!!


#13

It is my impression that cyberknife is used for particular locations like the brain or spine. I haven't heard of it being used in the lungs for sarcoma patients. To find out, you should actually contact a cyberknife specialist. If your sister's oncologist is not familiar with the technology, he is not going to be enthusiastic about it...


#14

thanks, i think i said the wrong thing. i'm interested in the technology that gets rid of lung nodules that has been mentioned on this board. perhaps it is gamma?

Elodie Espesset said:

It is my impression that cyberknife is used for particular locations like the brain or spine. I haven't heard of it being used in the lungs for sarcoma patients. To find out, you should actually contact a cyberknife specialist. If your sister's oncologist is not familiar with the technology, he is not going to be enthusiastic about it...


#15

Perhaps, you're thinking about cryosurgery done by Dr. Littrup:

http://www.karmanos.org/physicians/Peter-Littrup?LastName=L&PageIndex=0&SortField=1&SortDirection=1


#16

thanks for the link but i also remember reading about members here getting ?proton radiation . i guess i'll have to check the archive articles . the oncologist said you can only do this so many times . i'm not referring to the physician in germany but some members on this board have had radiation to their chest nodules here in the u.s. i remember one member stating how she had to take steroids due to a pneumonitis from the radiation


#17

I had radiation to one of my lung nodules before it was removed surgically but it was IMRT. I know Joan had proton therapy:

http://www.synovialsarcomasurvivors.org/forum/topics/joan-s-proton-therapy-is-completed

There is also neutron therapy which is more potent but I know only of 1 facility that offers it and although it has been discussed on other sarcoma forums, I am not aware of anybody who tried it:

http://www-bd.fnal.gov/ntf/


#18

Thanks Elodie, as always i've found you to be a fountain of information. That neutron therapy sound interesting.


#19

I had cyberknife surgery on my lung. The 2 nodules were less than 1 cm in size before treatment. They did shrink after the cyberknife treatment.I am considered to be in partial remission right now.They want to follow me via ct scans every 3 months. My oncologist told me that the lung nodules grow very slowly.