ca_paul
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Thanks Lainy,
My brother does not have stents yet.
I will remember Levaquin if any blood infection comes up.
We hope to see this week’s CA19-9 number. We’ve asked his doctor for more frequent CT scans so we can correlate with the CA19-9 numbers.Update:
The CA19-9 numbers has decreased as reported in the following blood draws:
6/3: ~18000
6/10: ~24000We are cautiously relieved that the numbers are trending down, but his primary oncologist cannot decisively determine how chemo is doing. All 3 liver functions metrics are in normal range now.
Lainy,
Sorry for not responding earlier. What type of infections are you referring to and how do we test for them? My brother has a cough, his oncologist tested that its viral (not bacterial) and for the most part is having my brother ride it out.Paul
Hi Lily,
I’m reporting back on my brother’s situation and our plans with radio embolization. As you may realize, every CC patient is different.My brother with intrahepatic CC was planned to receive Y90, another similar radioembolization treatment. (33yo, relatively healthy, has multiple ~20 liver and 2 lymphonode mets, so other options are not currently possible)
Originally the plan was to receive Y90 after chemo stabilized the cancer and verified it is not spreading. But after consulting two second opinion reviews of his case, we are considering Y90 for use as a later treatment option, when his body stops having positive response from chemo. Both of the second opinion reviews suggested a similar opinion, that at this point in his treatment (only 2 months after diagnosis and 2.5 rounds of chemo) the risks from radio embolization may not be worth the gains, as compared to the current chemo treatment. One major risk as noted with radio embolization is that it may damage “good” portions of his liver as it treats the tumor sites in his liver. If he loses liver functions, he cannot receive systematic chemo treatments again until his liver recovers. During the recovery time, the tumor may spread again.
Both my brother and his primary oncologist were very bullish on the Y90, but are both reconsidering at this time, because of the second opinions (from UCSF & Stanford). My brother actually went as far as going thru the Y90 consultation appointment.Again, this is his case, and the conditions for every CC patient is different. It actually shows the significance of second opinion reviews.
Paul
hi Simon,
its great to hear such great news and achievement.
it gives all of us hope for what is possible.paul
Quick update:
Since last I posted and the switch to GTX from gem/cis, my brother’s CA19-9 number increased to ~39000 on a blooddraw from 5/19. (the last CA19-9 number of ~24000 was from 5/13)
The CT from 5/19 show no changes as reported above.
In our visit to Dr Fisher of Stanford for a second opinion, among some of his comments, he explained that CA19-9 numbers do “spike” after initiating chemo. Furthermore, he stated that a good response indicator of chemo treatment is the “good feel” factor, where my brother feels better after the chemo treatments and the pain in the liver decreased. Dr Fisher’s review of the CT scans did not review any changes, but he did caution that CT scan results usually take longer than weeks to reveal.
The 3 liver function metrics (Alkaline Phosphatese (Total), GPT, GOT) have all returned to nominal ranges as of blooddraw from 6/3.
We are waiting for CA19-9 numbers from the 6/3 blooddraw, before his second GTX application.kamnbelle, after 1 GTX application, my brother is not showing any major side-effects. His fingers and toes are drying out and “blackening” but not very significant right now. Taxotere does cause some allergic reactions and my brother has been infused with Benedryl during the same infusion. He is not having nausea and only slight diarrhea. As he is continuing with GTX, I will report back.
Also, Dr Fisher (during the second opinion review) thinks gem/cis is NOT shown to be not effective from the evidence in this case, so he thinks we can go back to that at a later time. Folfox (which I found out is 5FU + oxaliplatin) is next on the table if GTX is not working.Thanks for everyone’s kinds words.
I hope reporting on my brother’s progress will provide helpful info to others.
My brother is approaching only 2 months since diagnosis, and has be a big emotional roller coaster ride.Update:
My brother repeated his CT scan last Thursday and reviewed the results with his doctor last Friday. The scans show no changes to the tumor sizes, they did not increase nor decrease in size. There are no new metastasis in other organs. This was after 1.5 rounds of gem/cis treatment.
There were no mention of any biliary blockage, so I don’t think the doctor can explain the increased CA19-9 numbers. The 3 liver function metrics in the blood draw (Alkaline Phosphatese, GPT, GOT) are still higher than normal range, but have decreased to half of the amount since before starting chemo treatment.
I think we consider that to be good news.
He started his Gem/taxotere/xeloda infusion last friday (abruptly stopping gem/cis in mid-round) and beginning to feel the side effects.Hi Sally,
It is very great news about your sister’s successful surgery and chemo treatment. I’m new to this forum and stories like your sister’s really gives us hope for my brother who was diagnosed last month.
May I ask, what hospital and doctor performed your sister’s surgery? My brother is told by his doc that his CC is “inoperable”. I’m in process to look for 2nd, 3rd, and 4th opinions.Thanks for your help.
Thanks for everyone’s response.
Marions, my brother is scheduled to telecon Dr Robin Kelley at UCSF for a second opinion review. I’ve seen Dr Kelley’s name mentioned on this forum.
Cathy, I will be looking up Dr Chapman at Barnes-Jewish Hospital.
John Thomas, I’ll definitely try to look up Dr George Fisher at Stanford.
Charlea, thanks for the info. I’m trying very hard not to be overly sensitive about ANY observations of my brother, but I’m asking about bones because my brother had a strange mild pain in the arc of his right foot. As he described it, it was not a sports injury, the pain appeared one day (about a week or two before chemo started) and persisted a several weeks now. He mentioned to his PA at one of his pre chemo meetings and the PA did not think it was anything notable. I’ll mention it again to him, but I’ll try not to be overly sensitive about these things.
marions, I’ve been reading a lot about CA19-9 and seems that this number requires a complementary test, like CT scans. And the numbers range is very different for other cancers, like pancreatic cancer.
Nancy, I’ve finding that the units for CA19-9 is U/mL or kU/L. From my internet searching, this number ranges from 0 to 50000.Lastly, my brother’s doctor stated that obstruction in the biliary tracts will lead to spikes in CA19-9 numbers. (I found the same info searching internet.) Although on the same blood draw as his CA19-9, his liver function metrics (I forget which ones) all indicated positive response.
We hope for better news from the CT scan in two days.Thanks everyone for your kind words. I find much comfort in talking to others.
Maria, my mistake on my bro’s treatment, he is on gem + cis, but will be switching to GTX this friday. More on this post:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=6197Charlea, thanks for sharing your info. One question that had been in my mind, how did you or your doc find the tumor in your hip? I’m reading that met to the bones is very rare, but searching the forum, I’ve found several patients with met to the bones. Currently, my brother only has been getting upper torso to lower pelvis CT scans, not at bones like arms and legs.
heartdoc, in his current condition, because of the ~20 lesions in both lobes of liver, transplantation has been ruled out by his doc. Also, I thought if the cancer has metastatized to lymphnodes, transplant will not work because of the high risk of spreading back to the new liver. Of course, our best hope will be a positive response to chemo, which hopefully leads to options like resection and/or transplantation.
Lainy, Gavin, I am working on more contacts with other hospitals for more opinions. With UCSF, we were directly introduced by a family contact with UCSF. How is the process typically done? I plan to just send out emails and phone calls to prospective hospitals and wait for a response.
Again, I have no doubts about his care at SCCA, but I recognize experience with this cancer will be very valuable.
I am also troubled by increasing number of young CC cases. With my brother, his lifestyle seemed to be minimal at-risk (non-smoker, casual alcohol, exercises/marathon runner, normal weight, job with low environmental exposure, etc…) which is why this is shocking, as with most CC cases. In fact, his doc deemed in such good shape to administer +25 to 35% more in his chemo dosages.
Unfortunately, we will wait to see if gem + cis is indeed not working, CT scan in two days.Hi Lainy,
My brother is being treated at Seattle Cancer Care Alliance by Dr William Harris. We started the process to transfer all the current paperwork to UCSF for a second opinion.
I’ve read and learned so much in just a couple of hours on this forum, and I appreciates everyone’s inputs.
I do recognize that this forum promotes 3rd and 4th opinions, so I’m researching where to pursue next.
I’m in no position to question the great care that my brother is receiving at SCCA, but cholangiocarcinoma is such as statistically rare cancer, that not too much doctors and treatment centers have dealt with it.I posted his current progress and questions here:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=6197Our family support and love him very much because he is the “baby” of the family!
Hi,
My brother was on the GEMZAR-cisplatin regimen since his diagnosis of intrahepatic CC on 4/13. After 1 round, his CA19-9 results came back at 24000 vs 17000 before the start of chemo.
He feels good and has minimal side effects during the chemo, but from the CA19-9 results, it seems to not be working.
His doctor will take schedule an immediate CT scan and will switch to GTX next.
He also mentioned Folfox too, so we’re also interested in response that others may have from this relatively different chemo cocktail.Thanks for your inputs.
