Discussion Board Forums Introductions! Newly diagnosed…what next???

Viewing 15 posts - 1 through 15 (of 23 total)
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  • #32926
    kristin
    Participant

    When I couldn’t keep my weight on, I made myself smoothies with yogurt, a big scoop of protein powder, fruit juice (mango was especially nice), a banana, and a big glob of peanut butter (golfball sized.) Whey protein powder has anti-cancer properties in itself. Also, fish oil capsules help stop weight loss in people with cancer, though scientists aren’t sure why.

    Now I have the opposite problem… not a bad thing for a person with cancer though!

    Hope this is useful. My best wishes to both of you.

    Kristin

    #32925
    lalupes
    Participant

    My sister’s been prescribed “Fortisip Plus” (3 times per day) for when she’s not up to eating. She really likes the vanilla & fruits of the forest flavours.

    It’s so scary when all you hear are bad prognoses; I don’t blame your brother being apprehensive of going onto what he may see as just another website where he might just hear more of the same. That’s what’s so wonderful about this site – there’s so much hope, optimism & support. It’s not blind hope either, as the survivors on here regularly show.

    Please send my best wishes to your brother. He’s a survivor, too.

    #32924
    gavin
    Moderator

    Hi fightforlj,

    When me dad came home from the hospital last year, he was given Ensure to drink each day to help as a supplement on top of the food he was eating. My mum, who has COPD and also needs to put on weight uses Skandia as a supplement to her diet.

    I’m glad to hear that you say your brother is back on track a bit and I hope this continues. From my own experiences, I know how much this site and the people here mean to me and how much everyone here has helped me through all of this.

    I wish you and your brother my best wishes.

    Gavin

    #32923
    marions
    Moderator

    fightforlj…..Some members on this board have had good results with Nutritional shakes such as Boost Plus. Adding peanut butter and/or bananas will increase the calorie count. Of course, you may come up with other foods to add flavor. And, you may want to keep an eye on the digestion. Enzymes have been used by many members on this site.
    And, to lift your brother’s spirits yes, we have survivors with this cancer. I can mention a few like Kris, Kristin, Scargegot . And, there are others. I am hoping that they will come forward and share their success stories.
    Good luck with M.D. Anderson and tons of good wishes,
    Marion

    #32922
    lainy
    Participant

    Thank-you for the update and we are glad to hear the news is better. We have some members who are just excellent with the nutrition thing. I am trying to get my husband to loose weight! Maybe you can pick out some of the success stories on our site and just print them out and let your brother read them. We do have some good stories. Slowly introduce him to us that way. One of the reasons we are here is so that our “family” does not feel alone and knows that we are here to help as much as we can by just even giving a Hello, we are thinking about you. That is great that you are going next week to MD Anderson, very good. Please keep us posted as to how your brother is doing.

    #32921
    fightforlj
    Member

    Well, I wanted to update the status of my brother. He had the 2nd ERCP and found an abscess that doctors said was too big to heal with IV antibiotics alone. So, despite the risks, they placed a JP drain and are administering IV antibiotics for 4-6 weeks. The JP drain has been successful and is still in him draining well.

    We are heading out next week for our first appt with MD Anderson. He has lost some drive/focus with all the complications with surgery and repeats of stents/ERCPs but I think he is back on track again. He has lost about 20lbs and trying to focus on weight gaining and keeping physically strong to get ready for chemo.

    My questions to you all…does anyone know of any good nutritional tips for weight gaining? I know I am going to search the site but I wanted to just put my question out there. He is naturally a weight lifter, runner, athletic guy who is used to eating well.

    Also, devoncat, or any other “survivor”, would you be willing to email my brother personally and shed some hope for him!??! I mentioned this website to him and he is still a little hesitant to read it. But I told him about some “survivor” titles on these profiles and his eyes light up!!!! He never heard the word “survivor” and “cholangiocarcinoma” in the same sentence. He keeps hearing bad prognoses and death sentence scenarios. He needs hope from someone in his shoes. Help!

    #32920
    lalupes
    Participant

    Very big welcome to the site, savinggrace. Please post again soon.

    #32919
    savingrace
    Member

    Thank you to everyone who answered…have been out of town for awhile… I really appreciate your responses…The referral to Dr. Venook will be really helpful….Thank you Marions!!! God bless all of you…I will keep you posted…it’s so nice to know there are people to reach out to through all of this… Take care everyone!!!

    #32918
    daddysgirl-2
    Member

    savinggrace and fightforlj, sending you prayers for strength and endurance as you advocate for your loved ones. It truly is a frustrating time to deal with such a wicked diagnosis, only to have to fight with hospitals, insurance, etc. I remember all to well, and it doesn’t help that this cancer is so unknown to many in the medical profession…of course, that may depend on where people are geographically located.

    As you will note from many on this panel, attitude is everything! Take a deep breath, stabilize and go to it.

    As for a second, third opinion…as many as it takes to get the job done.
    When attempting to get my dad a second opinion, he was too weak to travel out of the area…the only other opinions we could get were from doctors in the same office!!! Not really an unbiased situation. Mayo-Rochester looked at the files that were sent to them, and replied they concurred with original findings. Dad always hoped he could’ve had tests retaken for an actual second look…everything was based on original tests, that we had to FIGHT to get in the first place. If you are in a position to, advocate as hard as you can for your loved one.

    Courage,
    Jolene

    I noticed that in our clinics, we can now access our med files online??? I haven’t tried it yet; is this a possibility, fightforlj?

    #32917
    gavin
    Moderator

    Sorry to hear of your brothers troubles just now and I know that the waiting is extremely frustrating. My dad couldn’t get chemo so I can’t help you with that. I hope the ERCP will provide more information as to what is going on with his stent. Have your brothers doctors talked about any other types of treatments? My dad had PDT last year.

    My best wishes to you and your brother.

    Gavin

    #32916
    devoncat
    Participant

    Is your brother well enough for chemo? Forget the numbers for a minute..I mean is he physically strong enough now? Is he losing weight? If his stent is infected, chemo will not be a good idea now. It will kill off those white blood cells he needs to fight the infection.

    We all want to fight this beast NOW! I am one of them, but sometimes waiting for a bit is better in the long run. But your brother should start chemo as soon as he can. Doctors differ in their approach. I get chemo at the big university hospital when I would not at the smaller hospital. The smaller hospital combs my bloodwork with a thin toothed comb and if anything is out of quack, chemo is postponed. But the big hospital just goes for it. So you might find a hospital willing to do chemo with your brothers numbers, but is it best for his overall health?

    Since you are already gathering stuff for one hospital, go ahead and look for a third opinion as well. You never know how soon or how different their approach will be. Some places are chemo, chemo, chemo. Some say radiation, some say both. Some do photodynamic light therapy, some radio frequency abulation. The point is, that there are many different things happening and some do one type of treatment better than the other and you need to find a place that your brother feels comfortable with.

    I hope todays ercp gave some insight as to what is happening. If the stent was blocked, hopefully they could fix it so his numbers will go down.

    Kris

    #32915
    lalupes
    Participant

    I’m so, so sorry to hear of the problems your brother is having, fighforlj. Being in the UK, I don’t know what the procedure is in LA for getting a 2nd opinion but it certainly sounds like you need to fight for an earlier appointment.

    I’m sure someone from your area will have more practical advice than I can come up with but I’m sending my very best wishes to you all.

    Julia

    #32914
    fightforlj
    Member

    I am back again! I am more frustrated today than ever. My brother is in the process of recovering from his right colon resection. Almost two weeks postop, his legs are swelling, his abdomen is still distended, his eyes are yellowing again and his WBC is 25 and bilirubin is back to a 5 (from a 2, needing a lower level for chemo to start). Now they believe the stent placed (about 2 weeks ago) in his common bile duct is infected again. They are doing an ERCP again today to evaluate the stent. Also, we are fighting with MD Anderson to get all our files/papers collected, slides received and an appt set up. They are saying the first appt is Dec 15 which is too far away for me. My brother looks weaker and thinner than ever and I feel like I am just spinning my wheels! Should I take my brother somewhere else to reevaluat the stent, and start chemo. This waiting game is killing me!!! HELP!!!

    #32913
    hughesdewy
    Member

    Hello to both fightforlj and saving grace
    Its good to meet you but I know you would really rather not be here. But I just want to wish both your loved ones the best of luck over the coming days and months. This is a wonderful place for the BEST knowledge, comfort and compassion from sadly too many others in the same position as you, but the wonderful people here have certainly helped our family answer many questions and endure a similar journey, knowing we are not alone.
    Regarding question about the PET – as far as I know, there is a lot of information that docs can gather about spread of the disease through other exploratory means, such as biopsy/CAT scans/blood tests/general examination, etc.. they can see if tumours are primary or secondary and stage/spread due to the cell activity; so it may not be entirely necessary for him to have a PET if he has already had a number of other procedures, and it’s not a service which is freely available by their health provider. My mother’s health providers tend to use PET scans more to look at effects of chemo rather than to determine stage and spread of cancer.
    With best wishes and lots of hope for the following days for your brother fightforlj and ex-husband and friend, savinggrace and I hope they both have good, knowledgeable and above all caring medical teams on their sides. It sounds like they both have the best advocates they could wish for.
    Wendy

    #32912
    marions
    Moderator

    Dear savingrace….I am very familiar with Pacific Medical and I agree in that the residing physicians are quite experienced with liver disease. Certainly, Lainy’s suggestion regarding M.D. Anderson is something you might want to also pursue. But, being that you are residing in the Bay Area, you might want to start out in our vicinity and make an appointment with Dr. Venook at UCSF. Make sure to have all records including, blood test results, CT scans, doctor’s report, etc. The patient is entitled to receive everything pertaining to his/her disease therefore; you should not encounter any problems with your request. Dr. Venook will be able to answer all of your questions as he is a leader in the area of gastro. cancers and is recognized world wide. Make sure to have your questions ready and have a pen and paper with you because, much information will be coming your way.
    I am sending all my best wishes your way,
    Marion

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