amilcar
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Hi Jerry – 6 years! wow, it’s always so encouraging to see people that have put up such a great fight.
Dad is eating a little better and it feeling marginally better as well. I think the chemo just wiped him out. Hopefully it did some good. I am really worried about another cycle – probably more than from the cc itself at this point.
Thanks for the advice and best of luck to everyone.
Amilcar
Thanks for the words of encouragement Joyce.
I am still very worried because he is so thin and weak that a minor infection could prove incredibly problematic. Hopefully with some rest from the chemo and the new diet he can regain some strength and march along for a little longer.
Sadly to say I don’ think he’s really putting a great fight and I wish he would be stronger. Maybe being a physician himself and having spent over 20 years studying cancer has left him with all the gloomy views and little optimism these diseases can bear on a person. Sometimes I wish he would be more accepting of other ideas, suggestions and even alternative approaches to his disease but he is so focused on the mechanics and the science that he is worn out.
In any case, the rest of us are rooting for him and will stay with him throughout this.
Again, thanks to everyone and best of luck to everyone.
So dad went to the Dr. today and there are some mixed news. The bad news is he lost close to 20 lbs and is very weak. There is a clear correlation there. The Dr. already gave him some steroids and a bunch of dietary supplements and will be monitoring his weight very closely.
The good news is Dad only has the mild stomach pain and nothing else. His bloodwork was fine and his only off numbers where white blood cell count and this is likely driven by the chemo. He’s got no ascites, no abdominal distension and no jaundice or elevated alkaline phosphatase.
The recommendation has been to give him an extra week off from the chemo (cisplatin/irinotecan) and then reduce the dosage. The Dr. thinks dad reacted very poorly to the combo and will evaluate if it makes sense to continue with lower dosages. “Fortunately” he also thinks most of the deterioration was product of the chemo and not excessive tumoral progression. I think it might be early to call but we’ll take this for now.
Thanks to everyone for the insights, ideas and support.
Best of luck to everyone.
Amilcar
Thanks for the reply, I really appreciate the insight. What is really strange is that in his last CT scan only about 8 weeks ago he had no visible mass or lesions in the bile duct. (We had always been more concerned about his lung mets). I wonder if there could have been a major growth over the last 2 months. We got his blood work today and all the numbers are fine so it’s becoming increasingly strange. I harbor some hope that it could be the chemo and that we could try something less aggressive than cisplatin/irinotecan.
Anyway, I will keep my fingers crossed and hope for the best.
Thanks and best of luck to everyone.
take care,
Amilcar
Hello Cherryle – these symptoms are very similar to what my dad had twice over the last year. On both occassions he ended up getting pretty severe infections and one time if got very close so I recommend you ask the Dr’s to get a blood culture and test for bacteria and yeast/fungi. These symptoms are fairly typical in clogged stents/ducts and they can be manageable if treated promptly and preventing sepsis.
The chemo might not be the agent in this case but it will contribute to the infection by reducing white blood cells and impacting the bone marrow.
I hope things go well and best of luck to you and your mom.
Amilcar
Thanks Jeff – I truly appreciate your opinions and experience but mostly your positive approach to things.
We continue to look for options and hopefully the progression will continue to be slow. So far he has no symptoms so we are for the most part OK.
Again, thank you for the wise words and I wish you the best of luck!
Amilcar
So after a rather positive visit to the Dr last wednesday my dad starting feeling poorly on Friday, ran a fever and threw up. He ended up in the hospital and had developed an infection. It never got out of control but the team agreed it was most likely coming from the occluded stent. Yesterday morning he had a laparoscopy and was added another stent as a by pass.
I had not heard about this but the Dr’s went ahead and did it.
In summary, the metallic stent placed a year ago was getting clogged probably with a combo of tumor, biliry mud and all kinds of debris.
He is recovering quite well and should be back home on Wed or Thursday.
Best of luck to all.
Hi Mary – so dad went to the Dr. yesterday and they recommended against changing the stent for now. The team has not indicated it cannot be changed though and have considered revisiting this in a couple of months if things remain stable.
I will let you know if there is any progress or changes to be made.
Best,
Amilcar
Hi Robin my dad, 64 was diagnosed about 9 months ago with T4 CC. While he lives in Mexico CIty we are in Seattle and brought him out for several consults. He was seen in Swedish medical center (Dr. Gold), in Virginia Mason (can’t remember the Drs’ name) and also in an Oncoloy (WWCC) center in Lacey (near Olympia by Dr. Kang).
Our experiences where pretty mixed and to my surprise Dr. Kang was the best and most caring of all 3. I would certainly recommend trying all three and exploring your options.
Another option is UW Medical center.
Best of luck and sorry to hear about your dad.
Take care
Hello – my dad is 64 and was diagnosed with CC in April 2006. He was diagnosed by cell brushing (no visible mass) and a posterior CAT scan showed mets to the lungs. He was jaundiced and he had a stent placed and shortly thereafter he got better. Since June he has had 2 CAT scans and 2 MRI’s and there is still no visible mass and the lungs seem to be stable. He did have one complication in december (severe gastrointestinal infection) but it was a product of the chemo depressed immune system as opposed to tumor driven.
We are still very confused because we don’t know what to expect. Overall he is quite well and has responded “ok” to Gemzar. I am grateful he has managed to do well so far but I permanently feel like we are in the calm before the storm.
While it’s not quite a success we feel pretty blessed he has done well so far but are always uneasy. I also look for experiences similar to ours so I would be happy to learn from other with similar progressions.
thanks and best of luck to all.
Hi – my dad just had a magnified episode with fevers and spent about a week in the hospital. Some reasons for infection and fever (bacteremia driven) are necrosis and other cholangic problems that can be stent driven even if the device itself is not infected. Remeber there is a lot of reflux and bile can for clots that can become small infectious spots. The key is to address the symptoms early to prevent temperature and blood pressure to fall and create hepatic and renal deficiencies.
My dad is also stage IV with mets to the lungs and has had gemzar cycles (6 i think) and this also affects leukocytes so infections can be amplified.
Hi Joyce – my dad luckily came out (or is still coming out) of the infection. He was home 6 days after the initial outbreak and the MRI showed only some small absecesses. He is coming out of it slowly and will be on antibiotics for 6 weeks total (about 3 more). He’s still not eating all that well but it’s improving and he seems to be getting a bit stronger every day. Our big concern however is interrupting chemo for too long. It has already been 3 weeks since his last round and it might be an extra week or 2 before resuming. This scares us since we don’t want to give his CC a chance while it still seems to be moving so slowly.
Best of luck with your mom and I hope things turn out OK.
Regards,
Amilcar
Thanks Jeff. This situation with my dad is really complex; he had the endoscopy done and since there was no visible tumoral mass to get a sample the doctors did brushing in and that is how they got the cells. Since dad also had x-rays they found nodules in the lungs and had a biopsy – that turned out to be adenocarcinoma; in fact some doctors suggested it might have been primary lung but for some reason they rapidly ruled that out.
After that my dad came to Seattle (he lives in Mexico City) and we went to several hospitals in the area (Virginia Mason, Swedish and even an oncology center in Olympia). After all these visits, new CT scans and review of the paraffin blocks there is still no conclusion. We are thinking about Sloan-Kettering and the Mayo Clinic as well; at least so they can review his latest CT which came out essentially identical to the first one (althoug the Dr’s think some of the mets are calcified).
Again, thanks for your feedback and hopefully we can make some progress with my dad.
Best of luck!
Amilcar
Hi Jeff – my dad, recently turned 64 has been diagnosed with CC (last April). He is stage IV and his condition seems to be similar to yours with mets to the lungs. The big question and oddity we are still facing is that – thank god – there is still no visible mass on the ducts or the liver. All the cells that have been found where by brushing and for a while some doctors thoughts it could actually be pancreatic cancer and not CC. Was your condition similar in any way?
(Dad is currently on Gemzar and has responded OK, at least with relatively mild symptoms. That said we are still confused because there is no clear pattern and we are not sure what to expect.)
If you or anyone in the forum can relate to this progression we would like to hear from you. I personally feel like we are in the eye of the storm so I would really appreciate to learn from similar experiences.
Thanks and best of luck to you all.
Amilcar
