Why do I care?
Comments
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So sorry you are going through
such a rough period. It is not up to the Doctors when we die, we are all going to die whether we have cancer or not. I was originally told when I was diagnosed with stage iv 3-6 months because the cancer is so aggressive, but here I am now in my 17th month. I can't get down on the floor without help pulling me up, can't put on my own socks and shoes, sleep for what seems like days, then the steroids kick in and I can't sleep at all. I don't have the little ones but I am 54 years old and feel that there is so much left in me.
I know that the weight gain is coming from the meds, a small consolation but at least it is an explanation. No matter how bad it gets, I always know that tomorrow could be better. Just don't give up. Your family doesn't care about the weight, they just want you here.
I checked into some clinical trials but my insurance won't approve them. I live in one of a handful of states that does not require insurance to recognize them as a viable form of treatment even if we are stage iv, and I don't know how comfortable I would be getting something that is so new that they don't really know what the outcome will be.
If you are having doubts, get a second opinion. If nothing else another doctor may be able to give you other options. It is your choice to check out as many second opinions as it takes for you to be comfortable with your diagnosis. I have had a few and love my oncologist, but had to be sure that there was not something else out there that may work better. Maybe there is something to help counteract the se of the steroids. Steroids are hard, they change so much about us. But I would definitely talk to my onco or to another one and see if there is any other viable treatment without the se.
Sending prayers and hugs, I know it isn't much, but I know that they have both helped me. I wish you all the best.
Carol0 -
Lorazepam ( brand names Ativan)camul said:So sorry you are going through
such a rough period. It is not up to the Doctors when we die, we are all going to die whether we have cancer or not. I was originally told when I was diagnosed with stage iv 3-6 months because the cancer is so aggressive, but here I am now in my 17th month. I can't get down on the floor without help pulling me up, can't put on my own socks and shoes, sleep for what seems like days, then the steroids kick in and I can't sleep at all. I don't have the little ones but I am 54 years old and feel that there is so much left in me.
I know that the weight gain is coming from the meds, a small consolation but at least it is an explanation. No matter how bad it gets, I always know that tomorrow could be better. Just don't give up. Your family doesn't care about the weight, they just want you here.
I checked into some clinical trials but my insurance won't approve them. I live in one of a handful of states that does not require insurance to recognize them as a viable form of treatment even if we are stage iv, and I don't know how comfortable I would be getting something that is so new that they don't really know what the outcome will be.
If you are having doubts, get a second opinion. If nothing else another doctor may be able to give you other options. It is your choice to check out as many second opinions as it takes for you to be comfortable with your diagnosis. I have had a few and love my oncologist, but had to be sure that there was not something else out there that may work better. Maybe there is something to help counteract the se of the steroids. Steroids are hard, they change so much about us. But I would definitely talk to my onco or to another one and see if there is any other viable treatment without the se.
Sending prayers and hugs, I know it isn't much, but I know that they have both helped me. I wish you all the best.
Carol
Lorazepam (initially marketed under the brand names Ativan and Temesta) are usually prescribed with steroids to relief anxiety. I do not understand why your oncologist have not done it. Please request it asap. There are other ways to ease anxiety and appetite causing by steroids like acupuncture and acupressure, relaxation massage and herbs. Steroids are known for cause water retention, most likely some of your extra weigh is just water. You do need a doctor, who will take care of your side effects and make you comfortable and less frustrated. have anybody mention palliative care specialists? Please check if there is any in your area.
My heart goes out to you. Please reach out and find help which you deserve.
Hugs0 -
I understand your frustration
As you may know I also was dx with brain mets on 12/21 - Merry Christmas! NOT
The steroids have been the worst thing!!! No sleep, gained 12lbs in 4 weeks or whatever it has been. Mean, no brain to mouth filter. It's been a roller coaster ride. Thankfully my last dose was this past Monday.
I do have my kitchen, office and 2 guest rooms reorganized, usually did that between 2 a.m. and 6 a.m., especially on weekends when I wasn't worried about working my 4 hours daily.
I don't have the worry of direct care of children. My only child is married with 2 little ones, but I am not ready to go anywhere yet. Don't want to miss anything!
Hang in there, if you aren't taking Xanax or the equivalent, or an antidepressant, I would be finding out why. If you are, maybe you need a meds change. Your situation sucks, no way you are going to be happy about it, I am plain old PISSED.
Will be thinking of you,
Jennifer0 -
... Just my 2 centsgrams2jc said:I understand your frustration
As you may know I also was dx with brain mets on 12/21 - Merry Christmas! NOT
The steroids have been the worst thing!!! No sleep, gained 12lbs in 4 weeks or whatever it has been. Mean, no brain to mouth filter. It's been a roller coaster ride. Thankfully my last dose was this past Monday.
I do have my kitchen, office and 2 guest rooms reorganized, usually did that between 2 a.m. and 6 a.m., especially on weekends when I wasn't worried about working my 4 hours daily.
I don't have the worry of direct care of children. My only child is married with 2 little ones, but I am not ready to go anywhere yet. Don't want to miss anything!
Hang in there, if you aren't taking Xanax or the equivalent, or an antidepressant, I would be finding out why. If you are, maybe you need a meds change. Your situation sucks, no way you are going to be happy about it, I am plain old PISSED.
Will be thinking of you,
Jennifer
Please seek an second opinion, or third -- it appears that your current doctor
is not supportive in the manner to which you deserve. She surely does
not sound like a cheerleader of sorts.
Therapist, and medications may be needed to help you thru this very difficult period -
antidepressant, and therapy time may help relieve some stress in your current situation.
Have you contacted a Social Worker there at your Oncology Office? Please see if she
can help with programs that may be available to you.
I am so sorry ...
Strength, Courage and Hope.
Vicki Sam0 -
your post makes me mad. whyVickiSam said:... Just my 2 cents
Please seek an second opinion, or third -- it appears that your current doctor
is not supportive in the manner to which you deserve. She surely does
not sound like a cheerleader of sorts.
Therapist, and medications may be needed to help you thru this very difficult period -
antidepressant, and therapy time may help relieve some stress in your current situation.
Have you contacted a Social Worker there at your Oncology Office? Please see if she
can help with programs that may be available to you.
I am so sorry ...
Strength, Courage and Hope.
Vicki Sam
your post makes me mad. why should a doc be talking like that? The doc should be thinking of ways to promote your survival, and your current state of well or Un wellbeing. I would shop around for someone different. Unfortunately we have to be our best advocate. and i agree with the ativan.0 -
I am so sad things are not
I am so sad things are not going well for you,like the others have said i would see another Onc for second opinion since yours does not give you the support you need.My Onc. told me about clinical trials but so far i have not needed to try them.Yes not sleeping at night will make you grouchy and steroids will put a lot of weight on.My thoughts and prayers are with you.
Hugs Frankie0 -
JustFrankie Shannon said:I am so sad things are not
I am so sad things are not going well for you,like the others have said i would see another Onc for second opinion since yours does not give you the support you need.My Onc. told me about clinical trials but so far i have not needed to try them.Yes not sleeping at night will make you grouchy and steroids will put a lot of weight on.My thoughts and prayers are with you.
Hugs Frankie
wanted to let you know you are in my prayers and thoughts. I agree, your doctor should be more supportive. You have enough stress without your doctor adding to it. You're wrapped in love and support from all of us here!
Hugs & prayers,
Debi0 -
Why You Care
Hi,
The reason you care is because you are thinking of everyone else. You are a strong determined woman who isn't ready to give up. I would want a time element if it was me but to talk about dying is another thing. He/She seems very insensitive. I don't know where you live but Boston has clinical trials available. I'm sorry you are having to go through this. It's never easy, but don't get so down on yourself. Your making a valient effort to deal with it the best you can. I think you are wonderful and will say a prayer for you tonight. You care because you have a heart, your doctor obviously doesn't.
Terry0 -
PLEASE...mom62 said:Why You Care
Hi,
The reason you care is because you are thinking of everyone else. You are a strong determined woman who isn't ready to give up. I would want a time element if it was me but to talk about dying is another thing. He/She seems very insensitive. I don't know where you live but Boston has clinical trials available. I'm sorry you are having to go through this. It's never easy, but don't get so down on yourself. Your making a valient effort to deal with it the best you can. I think you are wonderful and will say a prayer for you tonight. You care because you have a heart, your doctor obviously doesn't.
Terry
Please seek out another oncologist for a second opinion....and one who is more sensitive to your concerns....
Wishing you the very best...
Hugs, Nancy0 -
Please do get a 2nd opinionKathiM said:Are you seeing a therapist?
I did, one that was referred thru my treatment clinic, who specialized in cancer...
She was a HUGE help!!!!
You are taking the right road...being able to talk (post) about it is the first step!
Knuffels, Kathi
Please do get a 2nd opinion and see a therapist also. You are going through so much right now and you need help in getting through it. We are here for you too, don't forget that.
Hugs, Lex0 -
I am so sorry..you are going
I am so sorry..you are going through this...sending good thoughts...your way
Denise0 -
I just want to make it all go away and make it betterdisneyfan2008 said:I am so sorry..you are going
I am so sorry..you are going through this...sending good thoughts...your way
Denise
for you, but I know I can't do that. You didn't mention whether your husband is supportive and what his thoughts are. A second opinion might be a good thing to do, perhaps at a major teaching hospital. I don't know where you are geographically, but there are so many around the country. Those connected with the NCI networks have access to many clinical trials.
I'm so sorry you're feeling your oncologist is so negative. I'll send along my hugs and prayers to add to the others.
Suzanne0 -
It gets to me that now your
It gets to me that now your doctor is telling you this. Surely there are things out there...even out of the realm of medicine. If your doctor feels no hope, she can at least direct you to other alternatives.
I read about a physician in the Readers Digest years ago. About how he was stage 4, mets to just about everything, so he had nothing to lose but go on a radical de-tox diet with fruits, veggies. When I read his story, it was 13 years ago that he was told he had weeks to live.
I know everyone is different. But I guess I would like to be given every option known to man. Please don't give up. Instead, as mentioned, get another opinion.
Keeping you in my thoughts and prayers,
Sylvia0 -
Friggin doctorsea60 said:It gets to me that now your
It gets to me that now your doctor is telling you this. Surely there are things out there...even out of the realm of medicine. If your doctor feels no hope, she can at least direct you to other alternatives.
I read about a physician in the Readers Digest years ago. About how he was stage 4, mets to just about everything, so he had nothing to lose but go on a radical de-tox diet with fruits, veggies. When I read his story, it was 13 years ago that he was told he had weeks to live.
I know everyone is different. But I guess I would like to be given every option known to man. Please don't give up. Instead, as mentioned, get another opinion.
Keeping you in my thoughts and prayers,
Sylvia
Get another doc ASAP. And on your way out slap the old one in the head.
Get started on what your new dr. says to do.
Surround yourself with positivity, encouragement, and prayer warriors.
You know we are here for you. And we care for you. I wish I could be there with you to push, pull or drag you through, but this is your battle. We can only hold you up, but that is all you need to get your second wind.
Take care, keep posting.
Jennifer0 -
On the list
You are on the prayer list for a solution to your problems.0 -
Letting you know that I willFrankie Shannon said:I am so sad things are not
I am so sad things are not going well for you,like the others have said i would see another Onc for second opinion since yours does not give you the support you need.My Onc. told me about clinical trials but so far i have not needed to try them.Yes not sleeping at night will make you grouchy and steroids will put a lot of weight on.My thoughts and prayers are with you.
Hugs Frankie
Letting you know that I will be praying for you.
Hugs, Kylez0
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