tess
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Dear LuLu, my heart go out to you and your family. It is a very difficult loss, with little time to prepare- after a lifetime of love. You are in our prayers.
Hugs to you.
-Tess
Hi Carol, I forgot to mention that we are not far from you. Dad is being treated at the Robert Packer Guthrie in Sayre PA. He has an aggressive team here that he’s very happy with. Should you ever decide that you wanted second options on anything- please touch base & I’ll pass on the contacts.
Best,
TessHello Carol & welcome. You & your husband have been through a lot in a very short period of time, my thoughts are with you. You have a great team here with a lot of experience, as you can see from the many posts, that can answer so many of your questions- or be simple be there to listen. My Dad has cc & was diagnosed in Nov. 08, the constipation has been a huge struggle for Dad, causing major discomfort & irritability. When he was in the hospital for several days in Dec. & was on a hydration drip, he was more normal than he’s been in several months… & while he knows hydration & stool softeners are key- drinking so many liquids is still a very big challenge for him. He also takes milk of magnesia (occasionally) in addition to the Maalox , this had a more immediate impact for the relief of constipation & indigestion for Dad. He starts the 5FU this week, in exchange for the gemzar, & this is may cause diarrhea instead of constipation according to the paperwork. The burping & indigestion are also causing Dad significant discomfort & he’s so very tired all the time.
Just wanted to drop you a note & remind you, along with the others, that you’re not alone.
Here is a link to some iron-rich food sources…. As an aside, the chemo really effected Dad’s appetite & we’ve found that lemon helps to rid his mouth of the salty/metallic taste, so that he can tollerate more.
http://www.bloodbook.com/iron-foods.html
Hugs to you Carol,
TessWelcome Kelly. I am sorry that you’ve had to go down the terrible cc road- you’re in our thoughts. My Dad was just celebrating a 5 yr. anniversary of being colon cancer free when he received his cc diagnosis in Nov. 08. I don’t know of any research to support the connection, but I can tell you it’s been Dad’s experience. My Dad is 64. Please keep us posted on your findings… as there’s much more research to be conducted in this field!
Hugs to you,
TessHey guys, just thought I’d post an update on the leaking bile & the increased jaundice, as the docs can’t explain it. It is suspected it’s bile leaking from the pic line, as it cultured negative for infection & is green like bile. Dad is awefully jaundice still & the doc’s can’t explain it. After numerous reviews, it appears that his biliary catheter, diverting the bile, is in perfect place and doing its job. Per the scans last week, after 3 mo. of gemzar, the tumor has not grown. However this week the CA19 is back up to 9,000 + & the bilirubin level to 14. Dad is not eating much & is so very weak. He’s expected to start 5FU via a daily pump infusion & radiation (brachytherapy) next week. I worry about his strength level. He also spiked a fever this week, with terrible chills & confusion. It held out for a couple hours as he refused to go to the ER, then it broke & he was back to normal. It was odd, in that it was his off week for chemo.
As an aside, I contacted a bilirubin toxicity specialist this week to inquire into potential negative implications of jaundice in the system for extended periods of time…. The specialist indicated that the form of bilirubin
that is accumulating in Dad’s circulation and is being excreted
in the bile will predominantly be the so-called “direct” or
“conjugated bilirubin”, which is not a toxic form of the pigment. He further noted that the toxic form is “indirect” or “unconjugated” bilirubin which is,
in general, a problem only in newborn babies and certain extremely
rare diseases. He says that although the jaundice may be extremely
disconcerting and worrying, one should not worry about toxicity from
the yellow pigment itself. That explanation did provide some relief following some readings on bilirubin toxicity.Keep us in your thoughts & as always, thanks for sharing your insights.
Best,
TessHi Larry, your story sounds very simular to my Dad’s. He has had the biliary catheter in since Nov., instead of a stent, to divert the bile. It is through this same tube that they will administer the radiation- in his case, via brachytherapy radiation, directly into the tumor. They are expected to discuss more specs on that next week, he’s been on gemzar since Nov.
Best to you!
-Tess
Hi Vincent, here are a few links for you to explore more on those treating cancer with mother nature’s liquid gold, along with a link to a couple CA milk banks. The milk is primarily intended for premature infants and the supply is limited, but according to the article, milk has been obtained for the cancer patient with a doctor’s prescription.
2. http://thelactivist.blogspot.com/2007/05/breast-milk-as-cancer-treatment.html
Milkin’ Mamas
600 Pacific Coast Hwy. #200
Seal Beach, CA 90740
(562) 598-MAMA / (562) 598-6262
http://www.milkinmamas.com/Contact-us/Mother’s Milk Bank
751 S Bascom Avenue,
San Jose, CA 95128
(408) 998-4550Best,
TessHi Karen, very interesting article…. one of the principals quoted in the article is Dr. H. Richard Alexander of the University of Maryland Medical Center- he’s one of several now conducting clinical trials on this technique, according to the article. The following link will take you to his contact information & one can read more about him (http://www.umm.edu/doctors/h.%20richard__alexander.html). There are responses in the commentary section of your link above, from people that have experienced the treatment …. One notes, “I had this procedure back in 2005 and am living a normal and fruitful life. If you would like to know more details I
That’s great news Ron. Please send a big bundle of well wishes to Lucille from all the crew here & let her know we wish her the very best. I think a good appetite is one of those things you become extremely grateful for when it comes to cc. Perhaps you might take her to a favorite buffet & celebrate (all day) ….. Just don’t try that one on the anniversary dinner unless you bring your own candle light!
Best to you both,
TessHello Joyce (squared) & thanks for the notes. Very interesting connection between the cholangitis & effects of chemo on liver. In Dec. Dad had an infection that they believe started in the region of tumor (potentilly with cath) & went to the blood stream. While Docs have indicated chemo is working, based on the CA19 tumor marker, they’ve not yet been able to determine if the tumor has shrunk at all- this will come with scans on the 17th of Feb. How wonderful to think that the chemo could have such an impact on the beast.
Do you know if it’s possible to have decreasing CA-19 numbers and increasing tumor size? Currently the doc argues that the chemo is working based on the CA19 number, but at the end of the day- if the tumor is not shrinking then it can’t be removed…. which is the objective. I guess time will tell.
Best,
TessThe radiologist indicated that the biliary cath, which serves as the stent of sorts, is not obstructed (following today’s scans). Dad’s bili levels are back up today, but radiology said he’ll have to go follow up with his oncologist – as they can’t explain the jaundice.
-Tess
You are a wonder woman Marion… there’s no argument there! From my limited time on this site, I suspect there is a very hard working dedicated (behind the scenes) team working to support it… thank you to you all!
As aside Marion, it looks like the abstracts of the proceedings from the conference are now available online. Note that the presentation highlights can be keyword searched via the abstracts, titles or authors. I used the abstract search function, as I was interested in those addressing intrahepatic cc & radiofrequency ablation. One can also limit an abstract search to those associated with ‘Pancreas, Small Bowel, and Hepatobiliary Tract’.
It is great to hear that your presence was so welcomed & your networking efforts so successful! I hope that you, Lainy & Teddy have equal success with the upcoming conference.
Conference Abstracts with keyword search functionality:
(http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_meeting_categories_view&confID=63)Best,
TessI saw Sophie’s story on the faces of cc page some time back…. and how excited she was about the new little Jan. 09 arrival. What a wonderful gift, please send her our best!
-Tess
Dear Ron, welcome & best wishes on your upcoming anniversary, and I hope all goes well with s.i.r.t. this week! My Dad has cc, and was diagnosed back in Nov. He’s been on gemzar since. We are not strangers to the pit in the stomach that you speak of! Dad had checked into microspheres, because so many docs. said they wouldn’t radiate and couldn’t resect. He wasn’t a candidate for that either, as the bili rubin levels were too high. He will start brachytherpay via his biliary catheter, in mid-Feb. Mom & Dad are looking forward to their next anniversary, as it too will be their 40th! Keep us posted on how it goes this week, you and your wife are in our thoughts!
-Tess
Dear Heartbroken, thanks for finding the strength to share. You’re not alone and you’re in our thoughts. My Dad was diagnosed in early Nov. Much like your father, he too refuses to hear of any diagnosis or cancer stages. I think it’s a coping mechanism, and I don’t know that he’d live life much different than he is now- even if he knew the stats. I’ve discovered that sometimes just being there, as you are with your daily visits, is all you can offer….. but it counts for a lot to our Dads.
This board is a great group of wonderful people, many of which are in the same positions of both you and your Dad. Feel free to post your thoughts and questions, you’ve found a good support system here.
Best to you at this difficult time.
Tess
