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my husband jeffrey, tried out tarceva for three months, the first month,showed great progress and shrinkage in his mets brain tumour, but now after the third month, everything has gone pear shaped and the tumor is back with avengance. am so so so upset, in fact i dont really know what to do, of course staying positve for jeff, and getting out and about, but to actually hear those dreaded words from the consultant, there is nothing more we can do, is just devistating. they will continue with the steroids, but to be honest i did not want to hear any more information and thank god neither did he, we will just play each day as it comes. but inside i feel so bad and sad.

10 replies

I am so, so sorry for your news. Have you considered another opinion? It certainly doesn't hurt. I'm thinking of you.

Piglet,
I am so sorry for your bad news but PLEASE do not give up. Quit only when YOU are ready. Prayers for you and Jeffrey...

I was told Feb 5th 2007 no further conventional treatment would help me and "get my affairs in order"..

I was told about Low dose Naltrexone and have been on it since Feb 12th 2007. You may wish to look into it as may help.

Google: Low dose naltrexone

Or
my web page
http://www.ldn4cancer.com

Thankfully I found out about it.

Dee

See if he is a candidate for Cyberknife treatments.

You can call or email the following, they are very, very knowledgeable:

Dr. Medbery: 405-272-7311 or email:
buddy@swrads.org

Dr. Spunberg - 561-624-1717 or email
jspunberg@radiationoncologyinstitute.com

If you email them make sure you give them all of his
diagnosis. Cyberknife is very successful on brain tumors if he meets the criteria. Hope this was helpful.

Rose

thank you all so much for your replies, i will definately ask his consultant for information on the low dose thing. but above all, to have the support of all of you from all the way over the atlantic is just wonderfull, its almost like you are in the next room. my friends here are all very nice, but if they have not been in a situation like this it is difficult for them to relax, they always seem scared to say the wrong thing, where as you all know just the right things to say, once again thank-you all

I remember hearing those same words from doctors, and I also remember being sick to my stomach. I wish I had this website to talk to because in my heart I kept thinking there was something else i could try, but never had time to find the answer It seems the people here know a lot more than a single doctor does. Try the low dose thing, why not? They tried steroids on my mom's brain tumor...but they really did nothing for her...and from what I understand, steroids don't actually shrink the tumor, they shrink the swelling around the tumor. I wish you the very best, just stay strong, and try the next thing...something has to work. Chris

I'm sorry to hear Tarceva didn't work. It didn't work for me either, after 10 weeks and a very bad rash, my lung tumor had grown by 25%.I'm on to the next treatment. I've had one chemo round of Alimta. I'll have it every 3 weeks. I'm hoping this will be the one. Hang in there.

I am so soory. I am in your shoes. My Roy has it in his lung, bones, and brain. The Tarceva worked for the first 6 weeks, we are working on the next. It is so hard when we love someone so much. Our faith is what gets us through. Roy and I know that God allows it to rain on the good and the bad. Nothing can happen to us that is not in His will. I don't understand it 'now', but one day we will. There is always a perfect will. I will hate to say good bye to my husband... even if we get to stay together for 100 years! We will love each other every second that we have. We have turned it all over to God and we do not even think about the stage 4 diagnosis until Roy has a doctors appointment. We would lose so much of 'life' if we start worrying and crying now. For all things there 'is a time and a season.' NOW is the time to LIVE. Love your husband and do lots of little and big things for him. Spoil him rotten! That's what I'm doing. I know that I will look back on this time and smile.
Come here (this site) often and talk with others. It will not be easy... so you need the friends that you will find here. You both are in our prayers.

thank you gypsy girl, for all your support, have not been able sign on for a few days, been busy spoiling and fussing and getting jeff out and about. have arranged a lovely christmas with all the family, i must be bloody mad, but hey ho, the more the merier. god this is so difficult, isnt it, every good and happy thing is so easily destroyed if you let your mind wander to the horrible nasty negative things, i truly feel that i am going completly nutty, could also be the menopause , jeff has of course been very down, since the bad news and it hurts so much to see him scared, what can we do, its just impossible. but onward and upward. there is always hope.

I am married to a very relaxed and laid back kinda guy. It is proving 'in his favor' in this situation. He literally is ignoring it. We remeber it when he has a doctors appointment. But otherwise we are living life, working, traveling, planning to go white water rafting the grad canyon this summer. I remind Roy that he better eat and keep up his strength because if he's too weak to hold on going down the CO... he's on his own!! I on the other hand am a type A personality. I totally freaked when we found out (not in front of Roy though). It took me about a month to come to terms with this and decide to just live. I too remember saying.. "I'm going insane". I found it so hard to just function let alone go to work and care for other people. (I'm a nurse). None of us knows when our time is up. We could all lose out on so much 'life' if we sit around and worry about how much longer we have. My best friends just lost their 20 yo son on Sun night. 20 years old!! Each day you are given another 24 hours to 'write you own story'. Roy and I decided that at the end of our 'story' we are going to come in 'smokin' and holler, "What a ride!!"
I think that Christmas with the family is great. You can make more memories. Have the cameras ready and take tons of pictures! You are in my prayers my friend!

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