Well myself and Colin found out Tuesday 4th June that the votrient done nothing for Colin even tho he was on the max dose of 800mg the tumors have still managed to get bigger, so needless to say we have had a week of rroller coaster of emotions, the docs have decided to admit him in to hospital for cycles of ifos, i dont understand why because he has been on this before although in saying that it seemed to be the only one that any effect on his tumors 2 years ago. I cant help but feel angry that this beast wont just go away and leave him alone as i'm sure everyone on this site feels at times. I am not very religious but i pray it will work this time and some sort of surgery can be done :(
This is a tough battle :-(
and a battle is exactly what it is, colin got the call yesterday to go in to hospital and he started the chemo today, its a tough one because the 2 younger kids are still in school so i need to be at home for them, the hospital is 90 minutes away so its not so simple to go to spend time with colin and spend time with the kids to so he is all alone for now :(
I am praying for you all. I know the story all to well. Your doing the best you can, your a great wife, mom!!!
Hey Shiela...
My husband, Dan, was pulled off Votrient last week as well. He was only able to tolerate the lowest dose of 200 mg (as his liver enzymes were always way out of the accepted range) so it was no surprise to us to learn that both lung mets have grown. Dan will be undergoing "thermal ablation" procedures at Sloan in the coming weeks.You are not alone....xo
oh boy it is so tough. What to say of use..I liked knowing other people cared. And we all do here..If you havnt already asked for help now is the time.I found it hard to ask for anything. Gary my husband has a second round of Ifos and it shrunk the tumours. It did not get rid to them but it did give us more time together and that was much wanted. I found Prayer good..its not always answered in a way we want but I could see other ways in which it worked.Every best to you all KAT
Thank you all for your kind words i am just back from the hospital and for the first time ever i brought the kids with me but only because he is a private room, i never agreed with taking them before but they are missing him so much it seems unfair to keep them away, god love them they had a great time playing on his bed because it is remote controlled, jkopetic i am sorry to hear about your husban its sounds like he found it tough although i must say of all the chemos colin has been on to date i thought the votrient affected him the most. Do they have another plan in place for Dan?, Kat im not sure if the doctors are expecting the chemo to get rid of the tumors but they do want something to get them under control so they can talk about surgery at least thats my understanding of it anyway.. i guess time will tell :(
Hi Sheila...your comment about the hospital bed made me smile. My two younger children (ages 11 and 8) also LOVED playing with the remote control. The next step for Dan is to wait for these thermal ablation procedures to take place. He will undergo 2 separate procedures (because he has one lesion in the left lung and one in the right). Apparently, the procedure puts him at risk for a collapsed lung, so obviously they wouldn't do both lungs at the same time. Dan will have his initial consult (with the surgeon performing the procedure) next week. After the procedure...who knows?? Dan will do anything he has to do, but I know he is dreading the suggestion of revisiting the Ifofsfamide (A.I.M) chemo cocktail. He STILL can't eat certain foods that remind him of going through all that. I just said to him today...that if Ifos is recommended again in the future, he should consider other alternative (maybe holistic) approaches. It soooo compromised his quality of life. But as always...the decision is his and I will support whatever decision he makes. Forgive my "french", but I just changed my Facebook profile picture to a "F*CK Cancer" icon...in honor of the upcoming Sarcoma Awareness month (July). Cause that's the kind of mood I'm in lately....xoxoxo Jeanne
oh i no exactly how you feel like us you have young kids and you think that both of you will be there at all the big events in their life thats a great icon to put as your profile pic.. what is this procedure Dan is about to have? i never heard of it before. Was he really bad with the ifos? colin was fine on it last time the only thing was i thought i was gonna kill him with my bare hands because of his mood swings with the steriods he was worse then any woman with pmt hahaha
Sp pleased you took your kids.Clever you, Good decision! I think it is the best thing to include them in all of this. It is your life and so terribly difficult to separate it out.
I always travel with my art journal and crayons or pens..when my kids were small they had pads and crayons or felt pens even colouring books...they loved them.The colouring books were only used when we were doing something contained like car trips or planes...hospital visits etc.
Shrinking tumours and Surgery would be awesome..it sounds hopeful.
JEANNE thinking of you and yours and hopeful that the procedure will be successful.I dont know alot about it.. Im not sure it is practiced here. Pleased they are trying something else.KAT
The way the doc explained "thermal ablation" to us is.....basically they use rays of either heat or cold (surgeon's choice) to disintegrate or melt the lesions. Although Dan runs the risk of having new lesions pop up (as all SS patients do), the oncologist said that regrowth of the same lesions (after this procedure) is rare. So...technically, if these procedures are successful, Dan will again be deemed "cancer free"...until further notice (if you know what I mean). UGH....never ending.... Where are you located Sheila?
I'm so glad I have you all to talk to!!
that sounds like a great plan and i hope it works you become so desperate dont you when it comes to treatments i am based in Ireland and i feel like we are so far behind most countries i have looked in to going to america with him but god we would need to win the lotto to afford it i feel useless to him because i cant so anything for him :(
Kat the funny thing is up until now although cancer is trying to rule our lives we dont let it and keep that totally seperate from our family life most ppl cant understand how we do it but somehow we do i guess we are trying to protect the kids because for them mum and dad are the ones that make all the wrongs right for them and we will only give them the full story when needed, they do no he is poorly but dont know the full extent of it or maybe im not ready to admit to myself the severity of it all and therefore by not talking about it makes it seem like its not as bad as it is.. the only place i actually talk about whats going on is here none of my friends know and only very few family members.
JEANNE Everything seems yuck and hard at times doesn't it..its good you can express yourself..because its the truth.
I used to feel scared when Gaz was making decisions like yes to chemo or more surgery and I used to feel equally scared at the same time that he wouldn't...And it is their decision, being a Sam Gangee is a very honored but increasingly difficult place at times.
I approve of your facebook name change! It is just that. My Art Journalling was a life line for me and having some of my own space occasionally to clear my head.Even Just a few hours..I didn't like being away from Gary much, so it was usually in the garden close by. A therapeutic Shopping excursion :-).
Thanks for the explanation about the thermal procedure.It would be so great if it worked.
Kat how long was Gary fighting, it must be very tough on you without him xxx
Thanks KAT! Like, Shiela, Dan and I carry-on and have not let the beast stop us in any way (when possible). But I prefer to talk about Dan's cancer to anyone who will listen!! Throwing the 'cancer' term around helps me to become desensitized (as sadly...it will never go away). Keep in touch ladies....We're in a special "club" that noone else wants to ever be in...and we need each other!
oh honey you need to let your friends know,The love and care that comes form that is overwhelming at times but so important,,tell one b]very chatty freind and she or he will pass it on..you need to share this load its too big and scary for you alone.I never wanted to ask for help and at times resented Gary when he told everyone so quickly as I wanted to keep a bit private and deal with it quietly and like you admitting it out loud makes it real.And I had pride thinking I could do this ,hes my husband, I didnt like sharing. But it is actually real and to need to share loudly and publicly now,the best you can.I have heard that the irish health system is old fashioned in its care and and how the staffing is managed but I would imagine they are as up to date with most treatments..we don't have the thermal option here but they do in Aussie Gary had too many tumours for it to be considered.YOU are actually doing the right things for him...writing here being his wife loving him and caring ..I felt so sad I couldn't fix gaz as it seemed like it was my job but its not..you can only do the best you can with the knowledge and resources that are available to you now.
Gary had cancer three years it was super tough and I miss him terribly.It also had some incredible moments and our relationship grew and grew..no time to do anything else. I feel complete in it. During the recent weeks I have been truly touched by the kindness of people and the love shown to me. People really are good and it comes through if you let it,It is the only thing that carries you
I do really feel for you and your family..check out if there any support available for you financially so you could maybe stay close by during treatment or even the last night before taking him home ..petrol vouchers.Your local cancer society would be a good support..here they have all sorts of support available..they have counsellors and massage therapists available here
Thats so true Jeanne we do, i think the reason i dont talk about it is because u get the looks of sympathy and then they go on to say thin positive and he will be okay then im like really will he and u became a specialist in this kind of cancer when exactly? and as for the thinking positive yes i do that but when you go to the doc and get bad news at every one you become immune to it and positive thinking goes out the window ahhhhhh its so tough and frustrating on us can u imagine what its like on them its their lives :( the best thing to come out of this nightmare is the fact i have ye great bunch to talk to who actually do get it and are goin through the same thing so thank you for that xx and please call me steph x
I was very bad tempered this morning growled at my son really growled at my meowing cat, Talking and listening to you guys has helped enormously..xx