peter
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Hi Jules,
Sounds interesting, and promising….thanks for the tip and your continued research. Note that, like some of the newer immunotherapies, this therapy seems to be applied directly to the tumor. This may mean it could be difficult to get treatment for those of us with matastisis. It does sound promising and we must continue to search.
I’ve taken a break from the research I spent months doing once I had a plan to follow but it may be time to start up again soon.
Great to hear your Dad continues to do well with the DC treatments. Strength and blessings to you both.
-Peter
Amllcar,
I suspended Xeloda for a month after 2 courses of treatment. My markers had started down and continued to go down when I was off the Xeloda.
My oncologist did not feel this was a good idea and believes it’s important to continue with some level of the chemo. However I’m now 4 months from the suspension and markers continue to recede. I’m now doing 1 week on and 1 week off of Xeloda. I do supplement this with a pharmacutical grade mushroom extract which I import from Japan. Search on my posts if your interested in more history.
I do not offer any of this as a recommendation, we just don’t know enough. Perhaps it can help with your understandable anxiety to know that one patients experience reinforces your doctors not being concerned about missing the week.
Best wishes to your Dad.
-PeterGeoff,
I’ve had my ascities drained twice and am now on 2 diuretics. 40 mg of Furosemide and 200 mg of Spironolactone. This, in combination with the other drugs I’m taking (Xeloda and Lentinan) does seem to be working to keep my Ascities at bay. It’s present but not intense like it was. I’ve been on this regime for a couple of months now.
My doctors are hesitant about the use of a shunt due to probably of infection in their experience. I do know others have tried it with some relief.
I’m in a ‘grace’ period these last few months with the beast held at bay for the moment and try to remember, and give thanks, each day for my remarkable good fortune.
-PeterTed & Patty,
I agree that the descriptions of Lentinen and AHCC sound quite the same. I don’t know if it’s the same thing. I had to get (with the help of a NY Chineese doctor) a compassionate use permit from the FDA to be allowed to import it and AHCC is available over the internet in this country so there may be some difference.
I had seriously considered AHCC and it has the advantage of being much cheaper since no US medical insurance will pay for either. This is not just unfortunate but just plain wrong. (I’ll stay off my soapbox……..)
-Peter
Geoff
Wonderful news. It’s gratifying to hear of success stories always and encouraging to know that the future of immunotherapies to beat this dread disease shows hope.
I also am experiencing some success. My marker numbers are down to near normal and I look and feel the best I have in 6 months. I am currently on a very low dose of Xeloda, continuing wtith lentinan injections which I import from Japan, and have increased/ both animal protinen and good fats back into my diet in an attempt to gain much needed weight back. I’m making progress on the weight (I’d dropped into the 130’s (lbs) which is too little for my 6′ 1″ frame). Something is keeping the beast at bay for the moment at least.
One thought on Ascities. My understanding is that it can be caused by the cancer but another potential cause is liver disease. In my case the scaring from surgery and build up of bile has probably caused a secondary sclerosis of the liver and I’ve been told it’s possible my ascities comes from that. Having said this my ascities is also down considerably, possibly the immune enhancing effect of the mushroom extract or perhaps the Xeloda. If they do drain your ascities they can make an educated guess as to the source by the color of the liquid and also send the fulid for pathology to test for cancer cells although this can apparently return false negatives.Keep up the good news!
-PeterGreat news Jeff. The longer we can hold this dread disease at bay the better the chance of finding long term relief if not cure.
Keep at the diet!I’m also fortunate to be experiencing good news at the moment. Some combination of diet, limited chemo, mushroom extract, life style and probably phase of the moon or the size of the stripes on Wooly Bears is also giving me a reprieve.
CA19-9 numbers continue to decline and most days I feel pretty good with good energy. I need to be careful not to ‘spend too much’ of my intenal resources, if I do I pay for it.
Best wishes and hope to all,
-PeterAnother update copied from an email on May 8th to my family & friends.
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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.
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
Richard,
My experience with a number of bouts with Cholangitis has been that the only real symptom is the onset of a fever. I’ve learned to recognize early signs of fever which in my case include a tingling and super sensitivity in my skin and a mild headache. I carry a prescription of CIPRO which I take. Stopping the fever is key to releiving inflamation and enhancing scar tissue in the bile tubes that get infected. The full name btw is Ascending Cholangitis.
I do have issues with itching but have never felt it was related to the cholangitis .
-PeterI too agree with Jeff.
It’s a very personal decision. In my case, at age 59, I tried a course of Xeloda (2 weeks on 1 week off) for 6 weeks. My tumor markers did go down considerably indicating that the disease had been helped/stabilized. I am also taking pharmacutical grade mushrooms and something in the combination seemed to help. By ‘help’ I mean it may buy me more time.
However the chemo was very hard on me, not an acceptable quality of life and it ended up putting me in the hospital. Today, 6 weeks following the Chemo I am just really starting to feel well again.
Having said this I am also now starting one more course at a reduced dose and a reduced frequency. I will do two courses of 1 week on, 1 week off and then test for the markers again. Regardless of the outcome I suspect I will not do more chemo after this although I will continue the mushrooms.
This was one of the most difficult decisions I’ve had to make. Like us all I want more time, but I want good time. For me being on chemo has not given me the quality I need but perhaps it will be enough to help with a good summer. Others have tolerated it well and spent months, occassionally years, on Chemo with a quality of life that was acceptable to them.
Blessings and best of luck to you all,
PeterTime 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.
Marion,
Although we never met I came to have great regard and respect for Bruce as I learned more of his work and his life via emails and our few phone calls.
You also have been a model for us in this disbursed community with your untiring research, hope and support.
Would that we had met under better circumstances but always know that Bruce and your family have enriched our lives on the opposite coast. I miss the comraderie he and I shared in our phone conversations.
Amy and I send our love and support to you and your family as well as thanks for the work you have done that benefits us all.
-PeterGeoff,
Great news. Good diet and a strengthened immune system seem like a solid basis for healing.
Have you been able to maintain a healthy weight on your diet?
I’ve lost over 50 lbs in the last year and have had to modifiy my diet (I was in the ball park of a microbiotic diet with lots of greens etc) to try to get my body to absorb more protein to sustain enough energy.-Peter
