peter
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Stacie,
Too kind.
I’d be happy to talk (chat) about my personal experience but I’m a neophyte at practices like Qi Gong. I learned the basics by taking some classes and actually now have a simple practice that I do which was given to me by my Chinese Med practitioner who has become a good friend over the past years.
You should see how those !@#$!@#$ cancer cells kick their dieing feet in the air in the dead cockroach position when I score a direct hit!!!
: )-Peter
Amilcar,
I was on what was essentially a macrobiotic diet with an emphasis on locally grown foods for much of my treatment which was also when I had the weight loss.
While I believe diet, organic food, etc are a key component of physical health I was sinking in weight too fast. I added back in quite a bit of good fats (nuts, avacodo, olive oil), upped my starch intake with lots of whole grain bread (and butter!), pasta etc and also some red meat a few times a week. In other words I have eaten to please myself and have indulged in other things flings with food as well. I also eat a LOT! Small meals but many of them a day. I’m not gaining like I would be if my digestive system hadn’t been so compromised but I am slowly gaining. Sometimes I’ll level off and not gain a thing for weeks and then I can pick up a pound or two again.
I’ve also been off Chemo for 2 months now and that has helped considerably.
No magic bullets I’m afraid. We’re each different, I find it helps to pay very close attention and try to listen to what our bodies tell us it needs.
-Peter
Kris,
I’m so sorry. It’s so easy to feel hopeless but Joyce is absolutely right. Don’t give up hope and don’t give up the fight. There are so many variables we never know where our paths will lead.
Is it possible while you are in the US to get a second opinion here? Could be well worth the hassel of getting copies of the radiology report, imaging, Dr notes and anything else you can get your hands on to bring with you. I realize this is especially difficult for you with the language barriers and different systems and rules then we have here. Pick a good cancer center here with CC experience, call them now (or perhaps your folks could do that) and send the reports, imaging and whatever you can get ASAP so they have time to look at it and possibly agree to see you.
Have you see the reports on work being done with radio waves reported here and in the press? It sounds like at least Bills wife was able to get insurance coverage for this. Stem cell work is starting to show promise in Germany. Immunotherapy in many forms is getting more attention and research. We all have to hang on to be here for the break through we all hope for.A few years ago a scan showed increased mass at the head of the small bile duct that was sewn directly to my intestine when I had the Klatskins surgery. This scared and disheartened me. (that’s an understatement) The doctors eventually decided it was scar tissue, not tumor, from the surgery and the intervening years have born out this assessment.
Courage!!
-Peter
Cathy,
I’d like to echo Jeff’s sound advice.
I quit working once I was hospitalized while on chemo. I believe this has been a component in my present state of doing quite well. I’ve drawn a long straw for the moment but we all know this beast of a disease just doesn’t quit and go away.
Not being exhausted by trying to work, not having the stress of being in a hurry nor the stress of the job seemed to give my body and immune system a little more reserve to fight the cancer. I am fortunate that my company has a disability policy I have been able to use. That will run out soon however.
Best wishes to both you and Gerry. May you have some good times ahead of you.
-PeterI didn’t know what this was and had to google it.
If I understand correctly then I think many of us have used what are at least similar tools in our fight against CC.
Visualization would be a form of our thoughts creating who we become.
.
I enjoy archery and shoot a wooden long bow. I visualize sneaking through the interior of my body, the image has this little figure dressed in woods clothes, and when I spot a cancer cell I stalk it and then shoot it!I also practice Qi Gong which, in part, involves visualizing the flow of Qi (life force) through my body and seeing my body in good health. I push negativity and disease down out of my body through the soles of my feet into the earth.
These are gross simplifications but I think it’s in the realm of what you are asking. Perhaps I’m way off base.
-Peter
Stacie,
Thanks for the update. It’s true that we were all shocked.
Certainly I was.
It’s odd to think of a liver transplant as good news but they are done so successfully now, as long as a donor is found,
-PeterJeff,
Nuclear bone scan, I’d better get your back,. Heck….we’ll both just get bullet proof vests!
Bone scans beat a set of labs anyday, aces and kings versus a pair of 2’s. I hope they don’t find anything other then some simple way to help with the pain. My CM guy keeps telling me it’s just “time and gravity Peter, working on all of us”.
As for Maine the lobster men don’t make you pull your own pots anymore so as long as you can pck a lobster with your right hand you may be all set.
-Peter
Kris,
May the MRI ease your fears! We’ll all be with you this week.I think all of us feel like emotional yo-yo’s some of the time. I can be feeling great one day and scared to pieces (potty mouth temptation on that one ) the next. One silver lining is that when your heart is on your sleeve like this you also can’t help but really feel the love around you. And sometimes we all need to put the walls up to get through the day or get a break…………
I’ll have new labs this week, results late Thursday. Sometimes I’m nervous, this time I’m scared.
#$% @#%!% disease!!!!!
-Peter
Sharon,
I’m so sorry to hear the news of your Mom. Events seem to happen so fast and leave us all wondering what we should do.
John Hopkins is a good Cancer center with CC experience and I understand that not being able to complete the whipple was a real blow.
There is no question that for many, but not all, of us Chemo has extended our longevity. Sometimes only weeks or months, and occasionally for years. Having said that it also takes it’s toll on most people who try it. This is such an individual decision. One key is that it really is your Mom’s decision along with her family. You want to gather as much information as you can about the options to help make an informed decision. No one will be able to give you the black or white answer we all want.
Check the section on alternative therapies here. Many of us have used different options again with varied success. One bit of wisdom that helped me with my decisions came from my Chinese medicine practitioner. My cancer was growing at that point and I was pondering my choices. He said: “If you have less invasive therapies available to you that can help stop a train that is going 25 mph, but your train is running at 80 mph right now, you may need to take drastic measures to slow the train so the therapies you believe in have a chance to help.”
One word of caution if your Mom decides to pursue a course of Chemo. Most cancer centers will offer their patients a regime based on the trails they are currently running in their institution or a Chemo cocktail they are familiar with. There are many options for Chemo, again you can research others experiences in that section of this message board, and again each patient is different. You Mom has a right to ask for what she would like to try (least invasive first is one option, hitting the cancer with what she considers the biggest guns available is another) hopefully in cooperation with her Oncologist. If a treatment is too harsh or not working don’t hesitate to try something else. Or to stop.
I wish there were easy answers. There aren’t.
Please keep us posted on how she is doing. This is a wonderfully supportive community. The support is not only a comfort but can sometimes help with the positive attitude and approach that is a key piece of our healing.
With best wishes,
PeterAll research is encouraging. Just seeing Cholangio listed in studies more often is a boost. Having said that so much more education of the medical community is necessary to have them think about using a test that may provide early detection. The fact that it is such a rare disease contibutes to making it traditionally difficult to diagnos.
This is where the Cholangiocarcinoma foundation comes in. Hopefully, with the support of everyone here and others, we will be able to raise awareness in the medical community to begin taking advantage of the tools and research on Cholangio that is/will become available.
My unabashed pitch for today.-Peter
The Lahey Clinic in Burlington MA outside of Boston is fortunate to have two Doctors with a great deal of CC excperience.
Dr Roger Jenkins (781) 744-2500
is a surgeon there who has helped many CC patients and
Dr Keith Stuart , (781) 744-8400
is an oncologist who has worked with many of Dr Jenkins patients as well as others with Cholangiocarcinoma.-Peter
I’m over 4 years with tumor markers currently all in the normal range and excellent quality of life.
I figure on chasing Jeff for another 20 or 30 years but I’m not sure I’m quick enough to ever catch him.-Peter
Peace and kindness to others
Courage
That I be present in each moment whatever it brings
That my body will rid itself of this cancer
My bile ducts flow freely
My liver be able to heal and grow.
That I will be well
That I be grateful and truly present in each day that I am given
That I will love and give back for all that has been given to me.
That we will gain the wisdom and courage to heal our planet.
and specific prayers for friends, loved ones, and others suffering from this disease and other hardships.
This is a very personal thing for each of us. Group prayer is a part of many cultures and religions and gives strength to many.Here’s a couple more that may hold some promise. Good to see occassional references to Bile Duct Cancer or CC.
http://money.cnn.com/news/newsfeeds/articles/marketwire/0319394.htm
And some encouraging Pancreatic research (another adniocarcinoma like CC) from Atlanta.
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“Three months ago, Young’s efforts may have yielded the most meaningful contribution so far. The University of Georgia, Young’s alma mater, was awarded a $2.1 million grant from the National Cancer Institute.Young’s story was the catalyst that prompted UGA to go for the grant, teaming up with an Arizona genetics company that treated Young.
The UGA researchers are pursuing the holy grail of pancreatic cancer discovery: a simple blood test that could flag pancreatic cancer before it destroys organs and becomes untreatable.
Success is by no means assured
