Topic: Brother diagnosed 2 months ago

Hi, I am new here, my brother is 43 and was diagnosed 2 months ago and is having a very difficult time. Surgery was ruled out with chemo as the only option for now. Gemzar ( I think it's called?) did not work and  the cancer has spread and tumor grew larger in short period of time. He has also been plagued with multiple blood clots and had a stroke a week and a half ago. He has no motor loss but has limited communication due to aphasia. Oncologist is calling this cancer very aggressive and has started him on folfox. My brother has had a miserable time with this one, with severe fatigue and lack of appetite. He is also clinically depressed. Anyone out there have any similar issues? Things are looking dire but we are all trying to stay as positive as we can. Our family is devastated and I am heartbroken for my brother and his family. It is hard to see him suffer so and to feel so helpless.

Mike, you will live on in our hearts and memories forever...

Re: Brother diagnosed 2 months ago

Dear oceangirl, I am heartbroken for your brother and family as well. As if CC is not enough he gets a triple whammy. I would think the ONC can give him something for depression. Who wouldn't be depressed? Have you tried some nutritional drinks? My husband loved the Carnation Instant Breakfast, Vanilla and I would blend in a Banana. It has all the needed nutrition and can take the place of a full meal. May I ask where he is bring treated and have you sought a 2nd opinion, we are huge believers in that. Try to keep up good attitudes, I know its tough but attitudes are everything. Also be VERY strong. I am hoping the Folfox does the job, we have seen it before on here. Much luck to you and I will be saying prayers that the Folfox works! Please keep us updated on his progress.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Brother diagnosed 2 months ago

Hi Lainey, thank you so much for your helpful and caring response. He has been started on an antidepressant but of course they take some time to take effect. I am not surprised he is depressed either with so much stacked against him.i will mention the carnation instant breakfast to my sister in law and see if he will try it. He has not eaten much since the stroke and starting the new chemo. He lives in and is being treated in Southern Maine and did go to Dana Farber in Boston, but not much more was offered or suggested for him. I'm starting to wish we had pushed for more opinions and looked at other places, but my brother can also be stubborn and it was tough to even get him to go to Boston at the time. We are hoping the folfox works too and that its all not for nothing as he has been so miserable. He is dealing with all this and having to be in rehab to get therapy for the stroke, because that treatment can't wait either. We are all trying to stay as positive as we can. somedays its really hard. its hardest on my mom and sister in law, they are working so hard to take care of and advocate for him. thank you so much for your kind and encouraging words and prayers. It helps to not feel so alone in all this especially this cancer we had all never heard of before. Peace-

Mike, you will live on in our hearts and memories forever...

Re: Brother diagnosed 2 months ago

Oceangirl, you are not alone anymore we are your new family addition! You post what ever you need to post and when ever you want to post it. You will get a lot of help from here!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Brother diagnosed 2 months ago

Hi Oceangirl,

Welcome to the site. I am very sorry indeed to hear what your brother is going through right now. As Lainy says, as if he and you all don't already have enough to deal with with the diagnosis of CC, but to have the other issues as well to deal with. My thoughts are with you all right now. I am glad though that you have joined us all here as you are so in the right place for support and help and I know that you will get a ton of each from everyone here. If we can help at all then we so will.

Depression can be quite common and my dad was given prozac as well during his hospital stay, he was in hospital for around 7 weeks. Yes they can take time to work and lets hope that your brother meds work for him, and if they do not seem to be working then please try and keep on top of that. A positive attitude will certainly help you all but I know that sometimes that can be hard to maintain. As to the nutrition, there are many drinks and powders that can be added to foods to help build up weight and you will find a ton of info on these here on the nutrition board that we have on the site. It can be found here -

http://www.cholangiocarcinoma.org/punbb … .php?id=12

Ensure and procal drinks work well and my mum takes these each day. She has copd and really needs to build her weight up. There are many drinks out there and some people prefer some over others. If meals are hard to digest then eating smaller amounts more often may also be of help to your brother as well. I assume that your brother will also be on meds for his blood clots too? Warferin?

My fingers are crossed that the Folfox works for your brother. Yes it can be very hard to stay positive sometimes and you and your family have far more than anyone should have to deal with at any time. Please keep coming back here as much and as often as you want to as I know that talking can help, it certainly did for me. And know as well that you are not alone in this anymore. We are here for you, we know what you are going through and we care.

My best wishes to you and your family,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Brother diagnosed 2 months ago

Gavin, thank you so much for all the wonderful support and resources. I am passing on to my sister in law and mom. It is so great to have a place to go where people care and understand and have so much knowledge and experience with this disease. Reading others posts and experiences is so helpful too. Our family is trying to find a way to provide for my brother and continue his recovery from the stroke at home so he is more comfortable and maybe that will help with the depression. One day at a time. Appreciate this site and all you do.

Mike, you will live on in our hearts and memories forever...

Re: Brother diagnosed 2 months ago

Oceangirl, I am sorry you all had to join this little family, but as you can see, we are here for each other and try so hard to help with issues.
I also had depression... Still do once in a while. I was on Ativan, then Xanax, but quit them in April when I felt I didn't need them anymore (besides, the Xanax made me dizzy).
When I lost weight, and didn't care about eating, I drank ensure. It's filled with nutrients and calories. Plus it tastes great. I still drink a little of it occasionally, for the nutrients. I definitely don't need the calories, tho!
If you can get him to drink, juicing or smoothies are a great way to get some nutrition without having to eat. You can make smoothies using spinach and fruits and get lots of good stuff in a shake form. Or juicing veggies is great (although I don't like juicing).
Good luck with options and I am praying the chemo works and your brothers treatment and therapy both go well.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Brother diagnosed 2 months ago

Hi Oceangirl,

Welcome to the sight.  I hope it is a real source of information and support for you at what must be incredibly hard to deal with.  You are right taking it a day at a time.  It is very hard to support everyone so please look after you too - or let us help you.  My sister was 41 when she became ill last October and suffered multiple setbacks and complications.  This site and the people here always helped at some of the hardest times.  I so hope folfox works.  X

Clare

In the stars now . . . .

Re: Brother diagnosed 2 months ago

Appreciate all the support and advice from everyone it really helps. I will keep mentioning the liquid nutrition to my mom and sister in law who are his primary caregivers. Thank you for sharing your personal experiences KrisJ. He did eat some lunch with my mom today. Is having a port put in for the chemo tomorrow and then trying to get him home. Praying every day the folfox is doing something.

Mike, you will live on in our hearts and memories forever...

Re: Brother diagnosed 2 months ago

Hi oceangirl,

I would also like to welcome you to this site and tell you I am so sorry to hear about your brother. I know it is so hard to watch a loved one battle this cancer. I'm sorry to say that my daughter, Lauren, passed away in June at the young age of 27. She was not hungry a lot of the time but always managed to love popsicles. There are some that are made from fruit and juice that have some nutritonal value. She also liked scrambled eggs, homemade chicken noodle soup, creamed chicken, and other comfort foods. It is so awful to not have an appetite when you need to eat to keep your strength up. I think Lauren was depressed as well, but didn't want to take antidepressants. She did talk to a social worker and that helped a lot. I did need antidepressants to cope with everything and they are a lifesaver for me. I would also say to never give up hope. A good attitude goes a long way and hope keeps a good attitude going. You are among friends here and we are all here to help. Bless you and your brother.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Brother diagnosed 2 months ago

Thank you Pam. I am so sorry to hear about your daughter's passing. This is such a horrible disease. It is sometimes hard to have hope. But we keep moving on. It's so hard. The support here is phenomenal. Appreciate you all.

Mike, you will live on in our hearts and memories forever...

Re: Brother diagnosed 2 months ago

Found out today the chemo is not doing any good. The blood clots are getting worse. My brother will going to hospice tomorrow. The oncologist thinks he has only weeks left. Our family is devastated. I am angry and sad and depressed, but mostly angry. i dont know what to do with these feelings. It's only been 3 months. He has a three year old at home. It is not fair.

Mike, you will live on in our hearts and memories forever...

Re: Brother diagnosed 2 months ago

Oceangirl....my heart breaks for your brother and his family and especially for his little boy. 
Hospice will provide the help needed so that all of you, his loved ones, can take in every minute of the day with each other and for each other.  Although, saddled with enormous pain and agony these are some of the most precious times togetherness can bring.  Physicians can provide a general overview of life expectancy (based on the experiences and patient symptoms) but they are not able to pin-point it.  Therefore, with comfort control and tons of love, your brother may very well outlive the predictions of his life expectancy.
My heart is with you,
Hugs and love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Brother diagnosed 2 months ago

Oceangirl I am so very sorry to read this. Are you having Home Hospice or taking your brother to a facility? I went through this with my husband and Home Hospice is fabulous. It gives the family time to all be together and make some more happy memories. It goes so deep it is unexplainable. They will be there  to help you when he ends this Journey and will also answer questions along the way. The most important thing though is his comfort whether at a facility or home make sure he is pain free. We were not born with expiration dates on our feet so who knows when, only one person knows. I think having his son around will perk him up as children are the best RX. And we are at a distance but know that we are with you in spirit. Any questions just ask those of us who have been there. None of this is fair and we all go through the anger but trust me that in time  the best memories will overtake all else. My thoughts are with you and the family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Brother diagnosed 2 months ago

Thank you all for your support and kind words. He is going to a hospice facility rather than home for many reasons. I hope it will be ok for him. I hope he is not afraid. It has all happened so fast. We have experienced hospice before, two of my uncles died in one, also of cancer, one just 4 years ago. My heart aches. I am so glad to have found this site. It is a little bit of comfort at such a sad dark time.

Mike, you will live on in our hearts and memories forever...

Re: Brother diagnosed 2 months ago

Dear oceangirl,

I just wanted to let you know that I am so sorry to hear things are not going well for your brother. I know things can be so hard to deal with at times. I wish for your brother to have a peaceful, pain-free time in hospice care. May you find comfort in him being well cared for.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Brother diagnosed 2 months ago

My thoughts are with you, Oceangirl, at this sorrowful time.  My heart aches for your family, especially your little nephew. May your brother find peace while surrounded by the love of family.

Willow

Re: Brother diagnosed 2 months ago

My heart goes out to you all as well.  Sending you lots of strength and light.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Brother diagnosed 2 months ago

Oceangirl,

I am so sorry to hear that your brother is not doing well.  I'm sure that hospice will provide the comfort he deserves at this time.   I hope that you all get to spend some meaningful time with him.   

It's hard to know what to say at this time.  Please know that you and your family are in my prayers.

Peace,
Mary

Re: Brother diagnosed 2 months ago

Dear Oceangirl,

I am so very very sorry to hear this latest news about your brother. My thoughts are with you, him and all of your family right now. The feelings that you describe are so common and many of us have experienced them also. My dad too also went through the in hospice care for a few weeks at this stage and they took excellent care of him and us throughout, nothing was too much trouble for them at all.

Right now your brothers comfort is the most important thing to consider and I am sure that hospice will do an excellent job in that. If I could give you some advice right now it would be for all of you to make the most of this time that you have with each other. Spend as much time as you can together and make some memories if you can that you will have through all of your life.

Having been there all the way with my dad I know that this is such a tough time for you. But I also know that you will find the strength to do what you have to do as well. Sometimes you may doubt that you will have that strength but I know that you will. We are all here for you and will help you as much as we can. Come back as much as you want to and know that you are not alone in this. My thoughts are with you and your family right now.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Brother diagnosed 2 months ago

Hi there Oceangirl;
just wanted to let you know that I'm holding you and your brother (and your entire family) in my thoughts.  Time is so precious and it's wonderful that you can spend some with your brother and family to make wonderful memories to hold in your hearts.

Tanya

Re: Brother diagnosed 2 months ago

Dear Oceangirl,

I really am so very sorry that your brother is now so ill.  Put all your energies in to the time you have with him, helping him be as comfortable physically and emotionally as is possible.

I so understand where you are right now as my sister was only 41 when she died in March and her daughter was only 3 at the time. I just want to give you a big hug and help you get through.  It all happened so fast - she died 5 months after being diagnosed.  I want to echo what Gavin has said that somehow, you will find the strength to get through each day.  Treasure every opportunity you get to spend time with your brother and help him make memories for his son.

Please use the forum for support as you feel you need to.  There is always someone that will support and help you through when you most need it.

Clare

In the stars now . . . .

Re: Brother diagnosed 2 months ago

Thank you all. Gavin and Clare thank you for your thoughtful and meaningful words. It all helps so much.

Mike, you will live on in our hearts and memories forever...

Re: Brother diagnosed 2 months ago

My brother passed away last night at the hospital. He didn't make it to hospice. We are still in shock. It all happened so fast. I feel his presence and I know he is ok now and no longer suffering, but we are so sad and miss him so much. I have no words to describe it.

Mike, you will live on in our hearts and memories forever...

Re: Brother diagnosed 2 months ago

Dear Oceangirl,

I'm so sorry to hear of your brother's passing.  There have been a few posts recently with the sad news of yet another of our loved ones dying of this horrific disease.  I feel for each and every one of you.

Please know, in your time of mourning, that you and your family are in my thoughts and prayers.  It breaks my heart that your little nephew will have to grow up without his Dad.

Be kind to yourself and take the time to mourn your loss.  I hope, in time, happy memories can ease your pain.

Love & Peace,
Mary