My history

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  • #13853
    peter
    Member

    Another update copied from an email on May 8th to my family & friends.
    ================
    I’m writing this time with good news.

    I’m am doing and feeling well. Today is the last day of the current
    Chemo cycle and, while I have some of the side effects which are
    manageable with care and naps, I feel better then I have in quite a
    while. A recent blood test showed another decrease in the tumor
    marker so something in the combination of Chemo/mushrooms/life that
    I’m doing is currently helping.

    To add to this good fortune I had the ascities (fluid build up in my
    abdomen) drained a couple of weeks ago and with help from the
    diuretics I am taking it has not come back as it did last time. This
    gives me both a semblance of a reasonable body shape and a marked
    increase in comfort. I can even bend over to tie my shoes again.

    I’ll see the Oncologist in Boston again in a couple of weeks and
    decide on the next step after that consultation. In the meantime I
    celebrate my good fortune.

    I will be away from email and computers for an extended Mothers day trip until about May 17.

    #13852
    jeffg
    Member

    Hi Peter, Sorry to hear of your current situation. A blast of support is coming your way. Have your ever heard of URSODEOXYCHOLIC ? I haven’t looked that far in to it ,but in short Iv’e read it has been used for Billary chirosis and also to treat ascites, juandice etc. It is also been used to dissolve kidney stones. I don’t know Peter, just shooting in the dark on this infor. Hopefully you will feel better after gaining some weight and increasing your protien. Best to You!
    Jeff G.

    #13851
    peter
    Member

    Geoff,
    I have not been working and some how missed your last message. My apologies.
    It’s hard to distinguish the portal hypertension symptoms from the cancer. Tired, some weakness etc…..stuff we’re all familiar with.
    If you get varicies as a result of the PHT, which I do not yet have, they can cause dramatic symptoms. They are fragile, tend to burst and there is then internal bleeding which can be intense and high risk.
    The increased protien from the organic meat does seem to be helping both how I feel and my weight. My weight stabilized at first and I now have managed to add a few pounds. I believe we’re all different and must listen closely to our bodies to find our best path.
    Things go well for me right now, see my next message, as I hope they do for you.

    -Peter

    #13850
    geoff
    Member

    Peter

    Sorry to hear about your current problems. You have such a positive attitude that if anyone can get through these issues then you certainly will. Anyway, your survival and active life since surgery in 2003 is an inspiration to us all and we need you to continue showing us a CC success story !

    I’d be interested to hear what symptoms are presented by the Portal Hypertension.

    Also I note that you are adding organic meat to your diet – is this better than fish in terms of putting on weight ? The reason I ask is that I avoid meat (but eat lots of fish), and like you I seem unable to put on weight.

    Best wishes

    Geoff

    #13849
    evan14
    Member

    Peter, I am sorry to hear of your most recent difficulties. We will pray for good results from your treatment adjustments. Dawn had surgery this last Monday to remove two lymph nodes that had recently grown in size. We will get the pathology report sometime next week.

    May God give you strength in your battle Peter.

    Richard

    #13848
    peter
    Member

    Time for another update, again copied from a mail message to my friends and family. It came at the end of an unexpected hospital stay last week. It’s written for folks who often have less knowledge of this disease then many of us here.

    Since getting home the medicine has caused some issues I’m working on, I’m trying to get back to a microbiotic diet with a good hit of protein thrown in to try to stabilize, if not increase, my weight. This means some organic meats and fish.



    1. The blood and vomiting that brought me in here appear to be the result of some pretty minor symptoms that are easily fixed. The test
    this AM will help confirm this.
    2. I do have some very consequential issues that are not new and that
    we have been tracking and are now getting worse.
    One is a restriction of blood flow through a vein that was part of my
    original surgery. This causes what is called Portal Hypertension and
    produces some of the symptoms and problems I am dealing with.
    The second is a restriction of the flow of bile from my liver which
    causes the bile to backup into the liver contributing to liver damage
    as well as other symptoms.
    Both of these restrictions are the result of the inevitable scarring
    that occurs with the kind of surgery I had. The scar tissue, likely
    mixed with tumor cells, continues to accumulate creating problems.
    3. The 5 weeks of Chemo ( Two 2 week cycles with a week off in
    between) appears not to have been effective in fighting the cancer as
    measured by a continued increase in the tumor marker in my blood.

    So, what’s to do now? While we had hoped that both of the
    restrictions could be eased with the insertion of stents to enhance
    the flow this does not appear to be possible in my case. The Doctors
    here, in consultation with Dr Jenkins who is my Boston surgeon and
    for whom I have the utmost respect and trust, have agreed that the best
    course is to treat my symptoms with a variety of drugs. I started
    most of them last night, so far so good.

    I also have now had a viewing of my stomach which showed an area of restriction. We’re waiting for the pathology report on a biopsy of the restriction.

    #13847
    themacks
    Member

    PETER,
    YOU HAVE BEEN MY INSPIRATION IN MY SEARCH TO FIND A WAY TO HELP MY DAD THANK YOU SO MUCH!
    Please read my post titled “Confused”
    You will understand why I am thanking you!
    God Bless
    Michelle and the whole Mack Family

    #13846
    peter
    Member

    Jules,
    The recommended off label drugs are:
    Avandia – Used for Diabeties
    Celebrex – Used for arthritis
    Zocor – cholesterol- lowering drug

    The pharmacutical grade mushroom extract is called Lentinan.

    PubMed search will yield results on all the above.

    I should have been more specific however. I’m not certain I will take all of these. In particular a couple contain warnings that they should not be taken by patients with liver problems. Most of us would qualify for this and I need to do more research.

    The research you mention sounds like oncolotic virus work I have seen elsewhere. My understanding is that the success in this area is working with solid tumors and not a systemic matastisis. I’d be interested in the link.

    Your Dad seems very knowledgable and I learn a lot from his posts. Reminds me again how fortunate we are to have this resource and my thoughts and prayers go to Mark and his family who made this possible.

    #13845
    jules
    Spectator

    Peter,

    Your attitude sounds very similar to my Dads (Geoff) – despite the fact that his recurrance was diagnosed April 06 his scans show no change. We have been told that at present research in the cancer immunotherapy field is moving very fast, if we can just keep things stable then the techniques are improving all the time. You may or may not be aware of some recent research carried out at Oxford University here in the UK which incoporated work injecting cancer with viruses including the common cold virus with impressive preliminary results – I think my Dad understands it better then me so he may be able to post and explain it better.. (I will look for a link and post it meanwhile). what are the ‘off label’ drugs you are planning on taking?

    I wish you all the best with the chemo regime, meanwhile I hope you have a great break and respite from it all in Colorado..

    Jules

    #13844
    peter
    Member

    Another update copied from a mail message to my family and friends.
    Geoff, I saw on another thread that you have completed 3 DC treatments and, I think, have a scan in Feb. We’re all praying for you and for news of break thrus in these new technologies which will hopefully become available here.


    I’m about to embark on the next step in this journey with cancer and
    it seems a good time for an update.

    The disease is progressing. I am more aware of changes in my body,
    the most obvious of which is increased bloating which is called
    ascities. I remain very fortunate that I am not in pain and most
    days my energy level is pretty good although I usually don’t sustain
    that for a full days activity. Fortunately I was never much of a
    ‘work all day and dance all night’ kind of guy so the extra naps fit
    in pretty well. I am walking a couple of miles most days before work
    and I skied (dust on crust is the closest we get to skiing in VT this
    year) over the weekend.

    I will be in Colorado next week visiting my daughter (Carolyn, I’ll wave in your direction) and will be starting chemotherapy the first week in February when I return. In conjunction
    with the chemo I’ll also be talking some off label drugs that are
    available in this country but are not normally used against cancer as
    well as some pharmaceutical grade mushroom extracts that must be
    imported from Japan and require special compassionate use approval
    from our government. We’re being helped in this are by Dr Chang in
    NY city who combines 3 areas I am interested in. Dr Chang was trained
    as a Doctor in China, came to the US for a medical degree from Brown
    and has worked at places like Sloan Kettering and the National Cancer
    Institute. He also has connections with the immunotherapy work
    being done in Germany that I feel holds promise.

    This all gives us renewed hope that I’ll be one of the lucky ones
    where the bulk of the cancer is reduced by the therapies and I gain
    extra time for miracles to happen or new treatments to emerge.

    #13843
    stacie
    Member

    Geoff,

    I’m very excited to hear the results of your DC therapy. Dr. Nesselhut’s was one of the clinics we did a lot of research on. There is something else you may want to look into as well while you are having treatments there. It is called Oncothermia, the website is http://www.oncotherm.com – this is another item that Pinnacle care suggests.

    Please keep us updated Geoff. What is the time frame for knowing how things are going?

    Stacie

    #13842
    marions
    Moderator

    Geoff,

    I don’t pretend to understand all the details of DC therapy, but obvisously they have substantial experience – both basic research and clinical – with dendritic cell therapy. Basically, in my opinion, this therapy is another long shot at treating a difficult cancer, and it’s similar to other chemotherapy long shots which have been tried, some successfully and some with ultimately disappointing results.

    In view of the very limited other chemotherapy options, I see more benefit then harm in trying this approach, except for the logistical issues of travel, expenses, etc.

    You have done great holding your cancer at bay which may or may not be attributed to the strict diet you are adhering to, so it seems logical to approach this cancer with therapies least harmful, and the possiblity of proving to be highly beneficial to you.

    Dendritic Cell Therapy has shown some very positive results.

    Thinking of you and wishing you the very best.
    Marion

    #13841
    geoff
    Member

    Yes I’ll report on this site when I have something worthwhile to say, at the moment it’s very early days in my treatment. All I can say for the moment is that I had no side-effects other than fever in the evening after vaccination.

    I have met a few other patients also staying at the nearby hotel, mainly from the US, but none with CC or related cancers. Dr Nesselhut does offer hypothermia. I don’t know about Mistletoe, I got the impression that he is not convinced about its value. He also offers chemo for some patients but not in my case.

    I want to stress that I am not recommending either DC therapy nor Dr Nesselhut’s clinic, this is really a research type of approach and everyone needs to weigh up the pros and cons for themselves. I’m willing to give it a try because the approach seems logical to me, and in any case I don’t seem to have many options to choose from. My oncologist in the UK is totally unconvinced.

    Geoff

    #13840
    peter
    Member

    Geoff,
    I know a lot of us will be very interested in any details of your DC experience you can share and of course your results when the time comes.

    Does Dr Nesselhut have any experience/results with other Cholangio patients? Does he combine the DC with other treatments like herbs (mistletoe) or hypothermia?

    Good luck and all the best results with your treatment.

    -Peter

    #13839
    alison
    Spectator

    Geoff

    I was very interestedto read that you are going to Germany to try DC therapy . Jon’s brother-in -laws brother is a GP in Germany and he had mentioned something about that ,( he has a friend who is a liver specialist in Hamburg) when we asked him for advice , unfortunately we were not in a position to have treatment in Germany.

    I wish you really good luck and will follow your progress on the site with great interest.

    Regards
    Alison

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