My husband has been told that after four different chemotherapy treatments, the latest one is not working, in fact there is a new growth and the old ones are growing all still in the abdomen. His pain has increased and his meds have gone up accordingly, but he is still working and refuses to slow down, and we have to let him do what he is able, for his own peace of mind.
We have been warned that the larger of the tumours could cause more problems with the bowel on which it is pressing, and this could occur suddenly. We had an event for four weeks back at the beginning of October when this happened, but resolved after steroids and stool softeners to decrease the inflammation in the bowel.
Quite where we go from here I do not know, the local palliative care team are involved and thank God for them, and it is like sitting on a ticking time bomb.
Has anyone got any experience of something this advanced please, good or bad it doesn't matter, I am just tired of fighting the unknown.
The abdomen location has its own particular challenges. Not many patients have SS in the abdomen. It may be difficult to find the answer you are looking for. Is there any treatment available for your husband except for the palliative care?
There seems to be none Elodie, all the relevant chemotherapies have been tried and one experimental trial drug. Radiotherapy is out because of the movement of the bowel and the proximity of the tumours to the bowel allowing no clearance. Further operations to remove the largest tumours are not considered viable. My husband is on increasing doses of pain meds (ZoMorph and Sevredol, both morphine based) and these seem to be working at the moment, although he is still having to max out on the back up pain killers.
I think we are nearing the end of ideas for treatment according to the specialists, whom we trust, and it may be that palliative care is the only way forward. We will find out more on January 11.
I wish I could find someone with experience of this kind of tumour location to discuss what is happening, or even someone on here who might have some insight as what we may expect. Thank you for answering me .
I'm on my tenth chemotherapy regimen. I understand the anxiety. For me, my tumors seem to be very responsive to radiation and some chemos, but as you can see, being on my tenth regimen demonstrates tumors become resistent and in a couple of my cases the chemo just didn't work. Fortunately, my Drs. (I have three different oncologists with different views...two are sarcoma specialists) are ready to move on to other possible regimens when the chemo stops working. Back in 2010 I had a tumor increasing in size that was 7x4cm in the thoracoabdominal junction which is the area between the stomach and esophagus. I had 35 rounds of radiation to that area which killed it. The side effects while on treatment was serious heartburn and the inability to eat certain foods, but Nexium and pain medication helped and I had an increase in my liver enzymes. I have some residual pain in that area, but as long as I don't press on it, it's okay.
So, I guess my question would be... has radiation been discussed as a possibility? I have tumors in areas where surgery is not an option, so radiation and cyberknife has lately been the best course of action and I've had a great response and I'm up to my sixth now. Weigh all of your options. Best of Luck!
My husbands cancer has metasticized in his lungs and so far they are small. Pat tried all the usual chemo's and votrient to no avail either. I just try to enjoy everyday as best I can with him. Thing is, we're all terminal it's just that some people know sooner than some others as to when their time might be. Can't they do any surgery to remove your husband's cancer, at least give his bowels a break or a colonostomy perhaps?
Which experimental drug was tried? I don't know if this may be relevant for your husband but there is a trial in France specifically for synovial sarcoma:
My husband has had doxirubicin, ifosfomide, axitinib, trabectedin and now cyclophosphomide all of which have not helped him. (all these are the names used in the UK). There is now talk of using gemzar (Gemcitabine), although the Professor does not think this will help, they are at a stage where they seem to be clutching at straws. Radiation has been discussed and dismissed, as has further surgery. Now we wait until January 11.
I am so sorry to hear this. I will be praying for you and your husband. The chemos quit working for my daughter too and she is now trying the target therapy drug, votrient. It's got a lot of side effects thats making her days miserable but at this time that is the only choice she has, to try and get her tumors under control and stop them from growing. She is young tough and determined. Like your husband she still goes when I think she should be taking it easy, and of course it is for their own peace of mind. Good luck and don't give up.
Votrient did not work for my husband unfortunately, the side effects were dreadful and he ended up in hospital twice. It is dreadful to watch the hospitals and my husband hoping and praying for the next one to work, and when it does not, the feelings of despair. I hope you daughter manages to tolerate Votrient. Thanks for your message
Not sure where your husband is being treated, but treatment centers use a different amount/formula for chemo. I’ve been to several. The most aggressive one I’ve met with is MD Anderson. You may want to try with them. My only advise is to aggressively pursue alternatives. God bless.
Thank you for your reply Sergio - we are in the UK, so I do not think the same things apply in the States but we are told we are with the best man in Europe and have to pin our hopes on him. Thanks again
There are many many drug therapies out there. Unfortunately, we are fighting a demon in the dark. There are no definitive answers. Love, hope and patience. Enjoy every day..........every single day.
Thanks for sharing where things are at,. Here is a good UK website (Macmillan) which I feel has some really practical advice on dealing with advanced cancer, there is a lot of useful information in here and drill down into the various sections of interest: http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Advancedcancer/Copingwithadvancedcancer.aspx
Men love to provide and work may not only be a distraction for him and time with work mates but in his mind it may fill a need to provide financially. If this is not the case tell him.
Ive also had the palliative team involved and they are fantastic, they are all about enjoying life and the time you’ve got and I think that’s what it’s all about. Although your husband needs to hear and come to terms with this and it doesn’t seem he is quite ready. For you I think just hung in there, you are doing as much as you can do. Good luck with the next few weeks/ months. Gary
Hi, just wondering, since you are in Europe, if you have checked the work being done by Prof Jean-Yves Blay and his targeted gene therapies, who is an expert in advanced soft tissue sarcoma.
Bristol girl said:
Thank you for your reply Sergio - we are in the UK, so I do not think the same things apply in the States but we are told we are with the best man in Europe and have to pin our hopes on him. Thanks again