pcl1029
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Hi,
For people who want to know more about stent and which to choose,
It may be of interest to listen to the answering segment on the video presentation on this web site, “review of CCA” on aug 3,2011. and listen to the doctor’s opinion.( the last 17 min of the whole program)
He also has other interesting comments about other issues ofCCA which I found the answers are candid and practical .
God bless.Hi,
Hilar CCA metastatsized to the liver ,microwave RFA can be one of the treatment choice.
In the States, radioembolization may be an option to consider first
.God bless.Hi,
Below is my suggestions when your husband will have radioembo.
There is a questions you should ask Dr.Sella at the APPROPRIATE
time:
when Dr. Sella ask you any questions about the procedure?
You should show your concern about the “test run” and say ” Doctor Sella, I am worry about the possibility of the leaking of the Y90 to other parts of the body,doc. please try your best to help my husband” .In that way you remind him you know a bit about the procedure and he will say.”don’t worry,we will try our best or we do this a lot but yes ,I will make sure your husband is Ok.”— this is a nice way to remind him during the procedure to pay attention at that point of treatment. Say it nicely to him with a look of a knowledgeable but worry wife and it will help too.Be sure to eat a lot and gain weight
God blessHi, Laura,
First and foremost ,as a patient myself, I have the utmost respect for your dad to endure such hardship during treatment and unfortunately lost the battle to this cancer.But his suffering will not be in vain.
It will not make any difference if you find this web site sooner or not and actually you have already helped us on this web site to understand one fact.
Before we recommend some place,some one to do something ,we should be careful not to overdo it.
Your dad’s unwanted experience helped all of us to understand another important lesson in life;That is no matter how renowned or famous a medical institution or physician; we should not blindly put our trust in them especially those
we assumed they are on the top of their fields. We should ask questions,get satisfied answers before we put our lives or love one into their hands. Since I am in a unique position , a patient as well as a medical professional. I can say this with my heart in it.
God bless your father in heaven.Hi, Janet,
“
I will ask for the results of the MRI at our next appointment.My husband has really been sick on the chemo he has been given. I am hoping the radioembolization won’t be as toxic for him. It has been 3 weeks since he had chemo, and he still has no energy, but he is eating better. “
Nothing you really can do till the MRI comes out , and as before,if you like you can send me via e mail for more privacy or put it on the web. either way is fine.
Tell your husband as I always remind myself; when ,as a patient start to feel better and has a bit more energy; then this is the time try to help ourslves to restore our health by drinking a lot of fluids to keep hydrated;(juice,soup,milk, ensure,carnation breakfast drinks and water) at 6-8 glass of 8oz glass a day,take a multiple- vitamin daily; and try to eat well and eat often; , fish,vegetable, lean pork,soy bean products and or other protein product (2000-2400cal/day depends on how much you weight) to help you gain weight and provide a better environment for the patient to endure the next treatment with less problems;(Always be prepare for the next step .)
At this point,Janet, chemoembo or radioembo may be the best choices and I think you should concentrate your energy on this current direction and see what dr.Seller? will do at the next appointment. I think resection and liver transplant may not be the course treatment for now until otherwise indicated.
godd luck
God bless.Hi,Fatema,
I found the the article link,here it is.http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=102&abstractID=82334
This is the link,I hope it works.
I think as you said,just wait til the next SCAN to see what the next course of action will be.
BTW, please give your opinion on the article after you read it. I think on the earlier study he mentioned only about 10-15% of the patients are KRAS mutated and it is a surprise to him and that is why this current study he tried to separate the marker driven treatment into two groups.
also did you consider radioembo or chemoembo (even your mom has metastasis ,in the States if pt. has metastasis,they may not qualify for the treatment)for the next step if your mom qualify ? i had chemoembo and I did not have any side effects and went home the next day. It may take a few sessions but it will give your mom a better quality of life. I personally donot like chemotherapy.
God bless.
God bless.Hi, Fatema,
I got the permission from Edmund and below is what his thought about the GEMOX+panitumumab he is currently on.
“Hi,Edmund,
I was requested by Dr.Fatema from Egypt from the web site for your thought on the GEMOX+panitumumab.
the following is the part I will disclose on the web if you permit me to do so.As I said before I am still on the trial, which began on July 13, 2011.
Prior to the trial there were blood tests to measure liver function and baseline other standard markers. I also had an eKg to test for heart conditionThe treatment has not been easy, mainly due to the panitumimab. But also because the three drug combo seems to spread the side effects over a longer period.
Side effects
1) the normal fatigue , constipation for the first 4 days (managed pretty well with drugs). Appetite is a little lower than norma for the first week…and then I need to eat like a crazy person in the second week to maintain weight.2) skin rash from panitumimab …was most intense side effect more so for first 8-9 treatments
After first treatment intense facial rash, felt like a sunburn from the inside
After second treatment face still hurt plus scalp broke out with open pustules
Lots of pain and blood trying to sleep at night lasted about 3-4 days
After treatment four same scalp issue with in infection
After treatment eight Intense breakout on legs and arms…it hurt to move
Since the eighth treatment rash has decreased in intensity but still have facial rash, scabing, misc rash arms legs and scalp
There is a lot of maintenance for the skin. Showers hurts a bit, need to stay out of the sun, lots of moisturizing and ointment.3) Typical oxaliplatin side effect cold sensitivity and after 13 treatments starting to get first signs of neuropathy
So a decent amount of side effects but the reason we kept going was we were responding
I have had an original scan and 3 subsequent post treatment scans. The original showed a large tumor in the left lobe (8.4cm by 7.9 cm) one measureable tumor on the right lobe (1.8 cm) and 20-30 Small hypo densities z in the right lobe. Will type in the impressions from the three scans but the summary is that we saw a 30%, 35 % and 10% reduction on the large tumor (61% total) and the 1.8 cm tumor can longer be seen.”Also,I have just found this from my notes at ASCO2011 convention.
this is the e mail address for Dr.Jensen.you can talk to him directly for additional insight. He may not remember me since there were so many people there at the convention.“BTW,You may have read this too. it is by L.H.Jensen” Marker driven systemic tx of inoperable CCA: Panitumumab and combination chemotherapy in KRAS wild type tumors.”it is on the ASCO web site under ACSO 2011 poster abstract No. 4010. “
who did the study about Panitumumab.Lars.Henrik.Jensen@ slb.regionsyddanmark.dk
God bless.Hi,Fatema,
If I remembered correctly,you mentioned reduced dose of cetuximab may be used for your mom by her oncology because your mom also has radiation treatment. If so, then the acneiforn rash may not be as severely as it should be.(the dose in the Gruenberger trial is 500mg/m2 for cetuximab on day 1 and repeated every 2 weeks for 12 cycles.) 13% of the patient (pt.pop=30 pt) had Grade 3 skin rash and overall,in clinical studies of cetuximab, acneiform rash was reported in 76-88% of 1373 patients. Therefore you may be correct in the assumption of the “mild” rash may not produce the desire response it should be for your mom.
“There is a trend toward improved survival with increasing grade of rash,with grade 3 rash appearing to have a longer survival as compared to patients with less severe skin rash”–direct quote from clinical pharmacology on drug info. for cetuximab.
From the same resource,,when discuss about colonCA patient on cetuximab in combination with other chemotherapy,”No benefit was observed over chemotherapy alone in patients whose tumor expressed mutant K-RAS.— In contrast to K-Ras wide type patients showed significant improvement in efficacy endpoints over chemotherapy alone.”
You may have to look into whether your mom is KRAS mutant or not.
As you know GEMOX+C or P are clinical trials use for other tumors.
The one study below is for Squamous cell carcinoma and is not using GEMox;they use cis/5FU+cetuximab ,but the strength of recommendation is strong and level of evidence rating are high and date of review is very recent 11/09/2011 take a look ;1.Vermorken J,Mesia R etal. Platium-based chemothrapy plus cetuximab in head and neck cancer. N Engl J Med 2008;359:1116-27.
I had studied the article”Targeted Therapy for Biliary tract Cancer” by Junji Furse and Takauji Okusaka,that you have mentioned about 3 months ago;. I did not looked at the Franch study but I did looked at the Austria trial done by Gruenberger because it was cited most often in the States.In my opinion, except the Gem/Cap+ Avastin that personally I have observed from my sister -in -law. with amazing results except the perfolation of the colon( I think patients who has diverticulitis are prone to this side effect if they take Avastin or other similiar targeted agents.);
Targeted therapy is still a long way to go . A well-known GI specialist who have done a lot of work on CCA at one of the most famous clinic specialized in CCA told me about Sorafenib may be of value to CCA patients;but I take a look at the old studies; sorafenib is not that special,but indeed as he said to me about 3 weeks ago, it is a targeted agent that target a lot of different signaling pathways in cancer cells. May be something is new on the horizon for that drug .
BTW,You may have read this too. it is by L.H.Jensen” Marker driven systemic tx of inoperable CCA: Panitumumab and combination chemotherapy in KRAS wild type tumors.”it is on the ASCO web site under ACSO 2011 poster abstract No. 4010.
I talk to the author Jensen during the 2011 ASCO convention, he said hopefully the results will be updated this year.
I still haven’t heard from the member’s response for the permission.I will keep you informed as soon as possible. But the side effects of his/her tx of the GEMOX+cetuximab is in line with the Austria trial .
The Austria trial did not tell us the “endpoint” (PFS or overall survival); however,he Poster #4020 will provide some insight on this front even it is not cetuximab.)
God bless.Hi, Fatema,
Thanks for your compliment, below are part of the info. about pantiumumab,avastin and cetuximab.that i discuss with him;
however,I will need his permision to copy his response and show it to you due to privacy issues.Did they give you antibiotics like minocycline or doxycline for your acneiform rash which occur in upto 90% of the patients who took panitumumab as compare to 76-88% of the patient who took cetuximab and 84% of Avastin users developed exfoliative dermatitis..
And how bad is your dermatitis problems NOW?
the other side effects of panitumumab being mentioned quite often is pneumonitis ,pulmonary fibrosis and cough.
so if you develop any respiratory related symptoms; call MD or go to ER rightaway to check it out.
for GEMOX+ Avastin —the median progression free survival (PFS) is about 7.6 month;and overall survival is 14.2months. So I expect more or less the same observation results for GEMOX+panitumumab and GEMOX+cetuximab..BTW,Fatema,If you like, you can email me like others at anytime so I can learn from you too.
God bless.Hi, kathyb,
No need to feel bad either.
Every person who use internet for information should realize that ,we are not experts, and we are only volunteers to provide our best to help the others and all of us should use our own judgement to use the information prudently and appropriately..
It is the reader’s responsibilities to discern the information and use them to the best ability of their own interest.
God bless.Hi,
If my info is correct. S1 will be available in the States in a couple years.and is now under studied by the FDA for its effectiveness as compare to Xeloda.Last year,when I attended the ASCO 2011 convention there was a poster about s1, and the gentleman on duty indicated that they will try to market S1 thru a larger drug company in the States. I will get more info about S1 in the up coming ASCO2012 convention.
Basically S1 is like the Xeloda (Capecitabine) that is current available in Europe and in the States. these are the prodrug of 5FU taken by mouth.
God bless.Hi,mcf,
Ascites and swelling of the legs are common problem happen more in ECCA then ICCA patients.In addition, liver decompansation do occur in in chronic cirrhosis patients who have the disease for a long time and ascites is a problem as well as portal hypertension due to the back up of fluids in the lymphatic system.
It may be of value to ask to see a nephrologist for consult and manage the situation. As Dr. Fatema Alzalraa indicated above; I did see nephrologist use ablumin and add Bumex(a more potent diuretic) together to manage the fluid problems . So, the more you come here,the more you may know .Thanks to other people like Fatemn Alzalaa not only come here often for info. to help her mother but also contribute to this forum what she knows to help our patients as well ;for that ;thank you doc. and if I mix up about whether you are a she or he,i am sorry.
BTW,how’s your mother? can you share what treatment your mom has now and is the results are what you expected ?
God blessHi,
Below is some info I reply to other members about radioemo;you can take a look.
if you have more questions, like others,you can email me the MRI and cat scan “impression” section to me to see whether I can be of further help for you in suggestion for radioembo.PCL1029 wrote:Hi,It is a potential good approach for intrahepatic tumor for recurrence too big for RFA and after unsuccessful treatment of TACE.
The side effects that I research on radioembo with Y90 is comparable to chemoembo with cisplatin and Adriamycin+mitomycin.
Its effectiveness also base on the size , number and location of the tumors and the patients’ health status;
Fatigue (40-50%) is the major side effect;nausea is second but it may only last for a week or so.The treatment is divided into 2 days.1st day is for the assessment of whether you can qualify for the radioembo Tx;MRI/PET/Cat will be performed at the hospital;Lab work will also be done (patients need to fast,not to eat anything the nite before) ; calculation of the radioactive Y90 dose will be done to maximize the benefit of the deliverty of the Y90.;a test run of the radioactive treatment will be done to make sure the Y90 go to the right places in stead of the stomach,lung or the intestine which will become a serious health concern.( all of these can take the whole day to do.)
In the 2nd day ,the patient will have an angiography and the procedure will be performed by interventional radiologist in a couple hours.and after observation for another couple hours in the hospital,if all goes well,patient can go home and will be seen by the doctor in a week or a month for follow up asessment.
In my personal opinion, as well as recommended by my 2nd opinion doctor recently, I will try radioembo with Y90 done by an EXPERIENCED interventional radiologist.(this is almost a MUST ) when the need arise;since many hospitals are now trying to have this option available to patients but most if not all,lacking the experienced radiologist to do it.
According to my knowledge, Northwestern university intervention radiology dept. in Chicago is best known for this treatment and research. Dr. Raid Salem and his team is recommended to me by my consulting doctor too.a very general reference may be of help as follows;but I am sure you have already done your research.
http://www.omicsonline.org/2155-9619/2155-9619-2-110.php
God bless.Radioembo is the new kids on the block that received a lot of attention lately.
God bless.Hi,
as long as you do not take more than 3gms/day,you will be fine.(that is 6tablets of the 500mg or 10 tablets of the 325mg. of acetaminophen.)If you take Norco,Vicodin, Lortab ,Percocet ,Ultracet or any Hydrocodone or oxycodone with acetaminophen combination formulations for pain., then you need to account for that acetaminophen amount in that formulation for the total not to exceed 3-4gm total acetaminophen per 24 hours.
I take naprosyn 500mg once or twice a day for the pain and fever with FOOD. and I like this better than ibuprofen.
God bless.Hi,
May I ask where was the GI Bleed occur.Is it near the esophagus or in the colon? What are the numbers that high enough for your concern and how much?
How’s your blood pressure? Any hypertension?How high is your blood sugar recently? Why had both CATscan and MRI done within such a short period of time?
If you want to ,you can email the ” impression” portion of the scan report,and I can take a look to see if I can be of help in decreasing your confusion? It may also be helpful if you can send along with the last available MRI “impression” statement for more understanding of the situation.
I think you know by now I am only a patient like you and not a doctor.
God bless.
