Aa
OT. MS keeps me from having Cancer Treatment
I spent 12 hours at the Cancer Hospital. Bloodwork, CT, and Doctor's appointment. My port was clogged that took 5 hours of waiting and they could not get it working.
My only hope for cancer treatment as the doctor excitedly told me is immunotherapy. Then she said I forgot you have MS you can't have immunotherapy it will excellerate I the MS. I asked if I could take that risk. She said no they will not let me.
My cancer has all doubled in the past three months. I am down to my last new chemo. She let me know there will be no cure for me. I was like an angry child with no options. I stayed that way for 5 minutes. I just have to enjoy what I have.
Dying does not bug me as much as 12 hours of waiting on nonsense. It is like the airlines. You pay for Lufthansa and fly southwestern.Five hours waiting to have a flush put into my IV. How dumb is that?
Alex
My only hope for cancer treatment as the doctor excitedly told me is immunotherapy. Then she said I forgot you have MS you can't have immunotherapy it will excellerate I the MS. I asked if I could take that risk. She said no they will not let me.
My cancer has all doubled in the past three months. I am down to my last new chemo. She let me know there will be no cure for me. I was like an angry child with no options. I stayed that way for 5 minutes. I just have to enjoy what I have.
Dying does not bug me as much as 12 hours of waiting on nonsense. It is like the airlines. You pay for Lufthansa and fly southwestern.Five hours waiting to have a flush put into my IV. How dumb is that?
Alex
Alex, that doesn't make a whole lot of sense, but a lot of things don't. Just looked at your vacation photos. What a very cool adventure. I hope your experiences and fun with your husband in Europe are giving you strength now. I am thinking of a rock warmed by the sun which remains warm to the touch after the warming.
You go, CR! You put it better than I ever could. But then I don't want Alex to fight this battle of procedure if she can't possibly win this one either. So I guess I don't know what I want, except for Alex to get well.
ess
ess
Oh Alex
Big boos, fist shakes and teeth gnashing! Maybe those rules need testing a bit more - potential help for a terminal illness which makes a chronic one worse isn't the best 'choice' in the world - but it should be just that, a choice. You should be able to voice what you want too and be involved.
I'm guessing although they know the MS would worsen, they couldn't possibly know how due to the unpredictability of MS. Again, questioning the 'maker of the rules' might make you feel you have a bit more control and they'd have to talk to you and say why the rule was there in more detail rather than a flat 'No'.
What a lot to get your head round. Knowing you're battling, surviving and coping the best way you know how, to then have the latest blow is something most of us can only try to imagine. I couldn't begin to put myself in your shoes to try to provide any half decent words of comfort.
I'm so glad this group has proved its worth and will continue to provide an avenue for you to vent and show you that strangers become friends even when they've never met.
Your ongoing spirit and ability to look for the positives you still have is so fantastic - as the others say, inspirational - and that's not a word to be used lightly.
Nx
Big boos, fist shakes and teeth gnashing! Maybe those rules need testing a bit more - potential help for a terminal illness which makes a chronic one worse isn't the best 'choice' in the world - but it should be just that, a choice. You should be able to voice what you want too and be involved.
I'm guessing although they know the MS would worsen, they couldn't possibly know how due to the unpredictability of MS. Again, questioning the 'maker of the rules' might make you feel you have a bit more control and they'd have to talk to you and say why the rule was there in more detail rather than a flat 'No'.
What a lot to get your head round. Knowing you're battling, surviving and coping the best way you know how, to then have the latest blow is something most of us can only try to imagine. I couldn't begin to put myself in your shoes to try to provide any half decent words of comfort.
I'm so glad this group has proved its worth and will continue to provide an avenue for you to vent and show you that strangers become friends even when they've never met.
Your ongoing spirit and ability to look for the positives you still have is so fantastic - as the others say, inspirational - and that's not a word to be used lightly.
Nx
I am deeply saddened by your post and I am at a loss for words.
You are truly an inspiration to all. In the short time I have been with the group, you have always been my hero. You are in my thoughts and prayers.
Gina
You are truly an inspiration to all. In the short time I have been with the group, you have always been my hero. You are in my thoughts and prayers.
Gina
Oh Alex, I don't know what to even say! I am in shock along with everyone else. I can't even imagine how you must feel.
I continue to say you are my inspiration and always in my thoughts! Huge hugs xo,
Barb
I continue to say you are my inspiration and always in my thoughts! Huge hugs xo,
Barb
You will never know how much this group means to me. When I was first diagnosed with MS I thought my life was over. I felt I would be a drain on my family and friends. I even thought of giving up. It was this group that got me through. To paraphrase Street Car Named Desire " I have always depended on the kindness of strangers". It is the collective kindness in life that gets us through. Like a lot of people praying for one person or idea. Even a smile to a stranger can mean a lot. In Hungary I only knew one phrase which was thank you. It lit up the faces of those I said it to. My language got me in a little trouble. In Germany I tried to say the food was delicious. I said I was christ like. The waiter looked confussed and told me my faux pas.
Alex
Alex
Alex,
I am praying for you and your husband, I cannot even fathom what that is like to be told that. We lost a coworker this year, she was only 36 to liver cancer. We just never know do we. Our lives can change drastically in a milli-second. Sending love, prayers and hugs your way
Shannon
I am praying for you and your husband, I cannot even fathom what that is like to be told that. We lost a coworker this year, she was only 36 to liver cancer. We just never know do we. Our lives can change drastically in a milli-second. Sending love, prayers and hugs your way
Shannon
Hi,
I'm so sorry and saddened to hear what you are dealing with Alex and can't even imagine what you & your husband are going through.
I too am on the same page as Karen, you are an inspiration to many people on here.
I've only been on here a few months but there are a few people already that stand out to me being so lovely, giving advice and support, you being one of the ones as others have said too that you think "I wonder if Alex has written today" as Karen says, as much as we don't know anybody, I feel already after a few months this site is full of lovely people it would be a pleasure knowing,
Sending wishes and Hug to you Alex.
T
I'm so sorry and saddened to hear what you are dealing with Alex and can't even imagine what you & your husband are going through.
I too am on the same page as Karen, you are an inspiration to many people on here.
I've only been on here a few months but there are a few people already that stand out to me being so lovely, giving advice and support, you being one of the ones as others have said too that you think "I wonder if Alex has written today" as Karen says, as much as we don't know anybody, I feel already after a few months this site is full of lovely people it would be a pleasure knowing,
Sending wishes and Hug to you Alex.
T
COMMUNITY LEADER
This is bloody shocking news and i am truly at a loss on understanding their logic!
Seriously, what on earth do you say or do after getting hit with that type of news...........throwing a tantrum, screaming at anyone within ear shot, curling into a ball, all sound like a perfectly reasonable responses to me........give em hell!
HUGS........JJ
Seriously, what on earth do you say or do after getting hit with that type of news...........throwing a tantrum, screaming at anyone within ear shot, curling into a ball, all sound like a perfectly reasonable responses to me........give em hell!
HUGS........JJ
Alex, I'm sorry is all I can say. I too follow Karen's sentiment. I am praying for you and your husband Alex. There are days when thinking of you gives me the moxy to get through my day.
HUGS, barb
HUGS, barb
This saddens me so much to read this Alex. I truly can't comprehend how "bad" things happen to "good" people and I often have what I call "my inner child" temper tantrums on a daily basis over just that! "Why me? why him/why her"? and WHY not those playing Russian roulette with their health, consciously!?
I really hope that "terminal" includes many more years of love and laughter. It's funny, I've never met you...but I find myself thinking of you and your steadfast practical positive attitude towards all that you are dealing with when I'm struggling with my symptoms. I also thought of you a lot when you were on vacation and hoping you were having a great time.
You should know that you have had such a positive impact on those who have crossed paths with you, and for that I thank you! I'm praying for you and your husband and those near and dear to you.
Karen
I really hope that "terminal" includes many more years of love and laughter. It's funny, I've never met you...but I find myself thinking of you and your steadfast practical positive attitude towards all that you are dealing with when I'm struggling with my symptoms. I also thought of you a lot when you were on vacation and hoping you were having a great time.
You should know that you have had such a positive impact on those who have crossed paths with you, and for that I thank you! I'm praying for you and your husband and those near and dear to you.
Karen
Immunotherapy is all in the study stage so they have guidlines. They have to follow no wiggle room. The doctor says there is no doubt it will make the MS accelerate. I may have not wanted the risk. I just wish I had more options. I could not be in other studies for other dumb reasons. I just felt I had my back up against the wall. Especially when the doctor said it does not matter what choice I make I will die because I am terminal. Knowing it and being told are two different things. More poor husband he got home and curled into a ball. I hate how hard this is on him. On the trip he took so many pictures of me. I hate the fact I will break his heart. My best friend just lost her husband and watching her pain.
I won't lie I am mad that I have to die before I hit my sixties. I do all the right things, eat well, exercise, do not drink or smoke. My doctor says she wishes she had more patients like me. She says you have bad genes.
The truth is I am pretty happy. Today I took my pup for a walk. My life is so good. The trip was fantastic. I love my husband and my friends. The MS has challenges but I can live with it. I just do not want a terminal disease.
I also hate the hassle. It took 5 hours to inject something into my port IV to get it flowing. After that it did not work. So a day in radiology to see why it does not work. They probably can't get it done before chemo in two weeks so I have to have an IV. It is like dealing with a slow airline and paying first class.
I have my book all most done. Now my editor/friend says I have to write about the trip.
Alex
I won't lie I am mad that I have to die before I hit my sixties. I do all the right things, eat well, exercise, do not drink or smoke. My doctor says she wishes she had more patients like me. She says you have bad genes.
The truth is I am pretty happy. Today I took my pup for a walk. My life is so good. The trip was fantastic. I love my husband and my friends. The MS has challenges but I can live with it. I just do not want a terminal disease.
I also hate the hassle. It took 5 hours to inject something into my port IV to get it flowing. After that it did not work. So a day in radiology to see why it does not work. They probably can't get it done before chemo in two weeks so I have to have an IV. It is like dealing with a slow airline and paying first class.
I have my book all most done. Now my editor/friend says I have to write about the trip.
Alex
I agree with everyone else. It should be your choice. I am thinking and praying for you!
Shannon
Shannon
Total BS!!!! How is potentially making your MS worse any different than any number of the cancer treatments they've given you before?
Treatments have consequences, if the patient is aware of the risk and willing to take it I find it unfair that the doctor would withhold the treatment.
12 hours to clean a port is equally unacceptable.
Many gentle hugs,
Corrie
Treatments have consequences, if the patient is aware of the risk and willing to take it I find it unfair that the doctor would withhold the treatment.
12 hours to clean a port is equally unacceptable.
Many gentle hugs,
Corrie
Dear My Hero -
What sh*tty news! I agree with ess and immie. If you want to, I would seek another opinion. What's the point of letting the sleeping MS dog lay if the cancer proceeds unchecked?
ANyway, keep smiling :-)
Kyle
What sh*tty news! I agree with ess and immie. If you want to, I would seek another opinion. What's the point of letting the sleeping MS dog lay if the cancer proceeds unchecked?
ANyway, keep smiling :-)
Kyle
That really stinks. (MedHelp will censor what I really think!). It seems like such a clear cut case of the patient being allowed to choose, if they know the risks. And it sounds like you do.
Give yourself more than 5 minutes of acting like a child if you need it. You can appreciate what you have *and* be righteously hacked off at the same time.
Thinking of you.
Give yourself more than 5 minutes of acting like a child if you need it. You can appreciate what you have *and* be righteously hacked off at the same time.
Thinking of you.
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