Eli
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Here’s a paper that looked at the management of hand foot syndrome in the patients receiving Capecitabine (Xeloda):
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2796406/
They used moist exposed burn ointment (MEBO) to treat Grade 2 and Grade 3 syndromes. They found it to be quite effective. My guess is that it requires a prescription.
If you are not squeamish, take a look at Figure 4 in the paper. It shows two patients before and after application of MEBO.
Patient 1, Grade 2 syndrome: A – before, B – after
Patient 2, Grade 3 syndrome: C – before, D – afterPercy, thanks for the link. The study looked at how urea cream can be used to prevent hand foot syndrome. There is no discussion of the treatment once the syndrome develops.
Percy, do you have a source for this note?
“but not when symptoms occur” … how important is this?
My wife applied tons of cream after she developed symptoms. Her feet ended up being a big mess. Lots of bubbling, cracking and peeling. Now that I see your note, I wonder if the cream made things worse.
Pam,
I think I read somewhere that Xeloda is worse than 5-FU in terms of hand-foot syndrome. Not sure if it’s true or not. My wife got a terrible h/f syndrome from 5-FU.
Our hospital recommended this cream:
http://www.udderlysmooth.com/dry-skin-udderly-smooth-udder-cream.shtml
As the name suggests, it was originally developed to be used on dairy cows. But it’s not just for cows. They do make a human formula. It should be available at WalMart and many other locations. See the list here:
http://www.udderlysmooth.com/availability.shtml
Like Lauren, my wife complained about foot pain and difficulty walking. She found it helpful to wear thick socks and thick slippers, to double cushion her feet.
Jim, take a look at this previous discussion about NanoKnife:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3976
It’s very, very informative. Note it includes a couple of posts by Dr. Sonnenday (user name HPB_Txp_Surg). One of his posts explains the difference between NanoKnife and CyberKnife.
My wife’s WBCs jumped up and down like crazy when she did chemo and Neupogen. Chemo brought them down below normal range. Neupogen brought them up above normal range. We skipped a few Neupogen shots once because we thought that WBCs were too high. They ended up dropping too low, putting her next chemo in jeopardy.
Barbara, welcome to our extended CC family. It breaks my heart to read about your beautiful Amanda. I know there is nothing I can say to ease your pain. I am very sorry.
I do want to give you an answer about CC among young adults.
We know that Intrahepatic CC has been on the rise. Intrahepatic CC specifically. Extrahepatic CC remained fairly constant.
Researchers linked the rise of Intrahepatic CC to the following factors: Hepatitis B and C, alcohol consumption, obesity. These risk factors cannot explain each individual case. They explain the overall upwards trend.
Unfortunately, we don’t have any breakdown of this trend by age. Is the share of young patients going up? Down? Stays the same? We don’t have any reliable numbers to say for sure.
Please accept my deepest sympathy.
Hugs,
EliLainy, thank you for your words of caution. They are spot on!
Kristin (Sedona) is not a CC patient, nor a caregiver, nor a doctor. Her knowledge of CC is very cursory at best. She strongly recommended Haelan without providing any evidence whatsoever that Haelan is safe to take for CC patients. I find her post reckless and irresponsible.
Memorial Sloan-Kettering has a page on Haelan
http://www.mskcc.org/cancer-care/herb/haelanAccording to MSK, Haelan acts like estrogen in the body. Multiple scientific studies found evidence that CC is an estrogen-sensitive cancer, meaning that estrogen promotes CC growth. Because Haelan acts like estrogen, CC patients should avoid it. It is likely to cause more harm than good.
Here’s a copy of MSK page:
Quote:Consumer InformationHow It Works
Bottom Line: There is no conclusive evidence that Haelan can be used to treat cancer in humans.
Haelan is a dietary supplement obtained by fermentation of soybeans. It contains compounds known as isoflavones that act like estrogen in the body and also have antioxidant activity. Laboratory studies have shown that these compounds slow down the growth of tumor cells. But recent studies indicate that isoflavones may also promote certain breast cancers.
Patients with estrogen receptor-positive breast cancers should avoid Haelan.Purported Uses
* Cancer Treatment
There are no data to support this use.* Allergy
Data are lacking to support the role of Haelan in treating allergies.* Inflammation
There is no scientific evidence to support this use.* AIDS
This use is not backed by scientific data.Research Evidence
No clinical studies have been conducted to evaluate the effects of Haelan in humans.
Do Not Take If
* You have hypersensitivity to soy products
* You are taking tamoxifen for estrogen receptor-positive breast cancer (the isoflavones in Haelan may reduce the effects of tamoxifen)Maria: thanks for pointing out that transplantation option is available in Sweden. I added a correction to my post.
Hi Wayne,
You asked:
Quote:Is everyone aware of the work of Dr. William C. Chapman at Washington University in St. Louis and Dr. Steven Rosen at the Mayo Clinic in Rochester Minnesota?I believe so. I don’t think we have a single member of this board who is NOT aware of the transplant option. The problem is, only a very small number of CC patients can meet the acceptance criteria of the transplant protocol.
This is my understanding of where things stand:
* Intrahepatic CC patients are currently not eligible.
* Patients with metastatic disease or positive lymph nodes are not eligible.
* Extrahepatic CC patients who qualify for a regular resection are not eligible for a transplant. This is despite the fact that transplant promises a better survival rate than a regular resection. This restriction is due to the shortage of transplant organs.
Once you exclude all of the above, you are left with a tiny minority of patients. Namely, extrahepatic patients with a localized disease (no mets or positive nodes) who cannot have a regular resection for some reason.
The last but not the least, transplant option is not available anywhere outside the US. International patients don’t have this option available to them. CORRECTION: transplant option may be available in some countries outside the US. See Maria’s post below about transplant availability in Sweden.
The bottom line:
Liver transplantation is the closest we have to a cure. Unfortunately, it’s not a universal cure available to all patients.
Best wishes,
EliPeggy, I am very sorry to hear about John. You have been so strong throughout his 4 year fight. I wish you continued strength during this difficult time. My heart goes out to you and your family.
Hugs
EliMy wife had epidural too. It worked wonders for her. They removed it on day 2 or 3 after surgery. She experienced very little pain.
