devoncat
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Good thing to go to Duke. There are a couple of drug trials going on there that you might be able to take part in.
There have been several people on Sorafenib….try entering it as a key word search to bring up some posts. I was thinking about bringing up this treatment with my doctor next visit.
I havent heard of Nexafa so cant comment there.
Best of luck at Duke.
Kris
Hollie,
I am so sorry things are happening like they are. I have such a heavy heart for Sophie, you and the rest of your family. Please tell her that I am still thinking of her and the impact she made on so many of us. I really miss her and her spirit and strength.Hugs to you and yours.
KrisScotsmum,
I too have a “difficult” dad and can only imagine what you must be going through. I am the patient in my situation and we always try to talk about what is happening and what it means. It was very difficult at the start, but now we can talk about most things (even if at least one of us still cries).I am an American and live in Sweden (though I was first diagnosed and had surgery in Scotland…lived there 7 years) and I was immediately teamed up with a psychologist. My husband and I have both joint and individual sessions and my wonderful psychologist will even include my parents when they visit. We meet sometimes every 2 weeks, sometimes every 6 weeks depending on our needs. This has been one of the most helpful things in my cancer journey. Perhaps you could talk to either the Mac nurses or the family gp to organise something like this for both your mom and dad and even you.
Be careful about remembering to take time for yourself and to deal with your feelings and emotions. You cant kick your dad in the pants, but you can tell him that he is making things more difficult for everyone. Perhaps he just needs some help coming to terms with reality.
Hugs,
KrisI got scans about a month after finishing a chemo regime. The doctor said wait about 6 weeks if you have had radiation. However, I didnt have too many problems with chemo that would have caused swelling so your dads case might be different. Yet, 3 months does seem a long time.
Kris
I hate when I randomly need to throw up…partricularly when I am out of the house. But a good friend assured me that people will not suspect that I have cancer, but that I am pregnant instead.
Rick,
I remember something about insurance companies funding clinical trials and I did a little research. Michigan law on this can be found here
http://www.cancer.gov/clinicaltrials/ctlaws-miI think perhaps this trial might fit that category if you are interested and you can get on it
http://www.clinicaltrials.gov/ct2/show/NCT01009801?term=everolimus&recr=Open&rank=116
Hope that helps.
Kris
Yeah, I had problems on xeloda. EXTREME gastric distress resulting in bad dehydration which required several week long hospital stays and then the adding of high dose liquid potassium to the drug mix and weekly infusions to keep my fluids up. Hand and foot problems too. But it kept things pretty stable.
Hope that helps.
KrisRick,
Wishing you success with whatever treatment you get. Lets hope the social worker pulls through for you.Kris
Dianne,
I am so sorry for your loss. As a patient, I can only hope that I can go as peacefully and surrounded by loved ones as your father did. I will keep your family in my thoughts.Kris
Lainy,
It is such a personal and tough decision. I can only add that I thought gemzar was so easy and I had it with cisplatin. From my memory, i think the side effects for me were tiredness and a lot of hair thinning. But how much of that was the cisplat?whatever Teddy decides will be the right decision for him. After 3 1/2 years since the start of my journey, I completely understand not wanting to do anything more. It is so tiring. The mental stress is sometimes unbearable.
Hugs,
KrisRick,
It is ok to have moments of doubt, fear and frustration. I too sometimes just want to throw in the towel. In fact, Hans and I had a discussion about when is it ok for me to just stop fighting and focus on living. We havent come to any conclusion. Sometimes I feel like today is the day i stop and other days I cant imagine stopping the fight.We cant be perfect patients or people. Our feelings and strength are affected by our physical and psychological well being. When one gets out of alignment, when the pain is constant or intense, it becomes natural to wonder what it means and to search for a different path.
The psychological strain you have been under recently is unimaginable. The wrong reading of the scans and added to that the worry over a treatment plan that insurance may or may not cover. You need time to process this information and accept what has happened. It is NOT fair, you did NOT deserve this but unfortunately this is the crap that has been served on your plate. You will find a way to deal with it because you have to. You have a family that needs you. That may mean you have to keep fighting or that may mean you decide to stop which I sometimes think offers a peace and acceptance that you can not have while you are in fighting mode. Which choice is best for you and your family is only something you and your wife knows. However, given everything you have written in the past, I believe you have a lot of fight left in you once you get a chance to regroup.
Hugs of support and understanding,
KrisLainy,
We eat in the South too. Nothing can go by without food…it isnt just the Italians and Jewish.Hope Teddy enjoyed the golf. My dad is slowly giving it up as he ages and I think he really misses it. Glad Teddy is keeping at it.
Hugs,
Kris
