pcl1029
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Hi,
I just do not understand if your husband was on Gemzar/cis/Avastin from Jan.2011 till May 24,2011 and still had “more nodules of the lungs and lymph nodes” as you indicated;unless I do not understand English well or something was missing from your description about your husband’chemo treatment;the old regimen of Gemzar/cisplatin/Avastin clearly was not working. Why the doctor put him back on the same chemo minus Avastin this time.?Did he think that Gemzar/cis this time will work after the failure of 9 cycles of the same chemo with Avastin? Most of the time ,the doctor will discontinue Avastin when it produces side effects such as colon perforation or liver abscess and continue to use Gemzar/cis if the regimen of Gem/cis works(ie: tumor shrink(partial response) or not growing(stable response)etc.) In your husband’s case none of the above responses happened;so it leads me to conclude that the Gem/cis regimen is not working When you indicated that more lymph nodes and lung nodules involvement after 9 cycles of treatment.
Again, I am not a doctor,I am just a patient who happen to know a bit more about chemo like many others on this site.
You know,sometimes doctors cannot be 100% right too,but I may be wrong.
Good luck.
God bless.
where do you live? Can you get another oncologist who does NOT belong to the same group of practice and get a 2nd opinion on the treatment plan.In short,I am confused about the logic of giving the same chemo base on the information you provide.and please forgive me for my tone of voice in writing this;I just concern about your husband’s treatment.
Hi,Marion,
We can start simple,we had 1600+ members; we can start with the current members who are caretaker or patients themselves or we can set a time frame(ie: only for patients who had cc in the past 5 years etc.).
If we can give funding to help research on cc,we can hire 2 college students major in statistic or med students for a summer or winter break job to go thru each entry and fill in the banks or itemize of the info we needed provided by your son(the epidemiologist).The reason for 2 students instead of one is for cross references.
Our members may just want to know each other better and may not need in details survey info.like the one I suggested a while ago for the purpose of research.
On the same note,if you can please let the board members in the phone conference know that my suggestions about the up date of the topics changing in the forum of research on this site to see what they think.If I may suggest,if we can
1. Expand “chemotherapy” on that experience forum ,put it first on the list as “Systemic treatment options “—chemo therapy ,molecularly Tagareted therapy,immunological therapy and others ” to reflect the current progress of treatment plans available.
2.Move the Radiation to 2nd place on the forum to reflect the importance of it and change the entry to “Radiation Treatments and options” to reflect Radiation is a viable and important treatment option for CC.
3. Combine “resection and transplant”and change to”Surgery,Resection and Transplant Treatment options” into one entry and put it as #3 on the list because all use the surgical technique as the means to achieve their goal.
4. Change the “side effects” to “Adverse Reactions and Side Effects” to reflect other problems that is not related to medications only(ie: stents dislocation; problems caused by disease state. eg. ascites and infections etc.)
4. Change the “alternative treatment” to “complementary and alternative treatment-CAM” to reflect the up to-date usage for discussion of the topic.
5.Create a new entry like” Bits and Pieces of Information “to share and update about cholangiocarcinoma.” — a few lines of information( small entries) that we can enter and share without long entry after research.
Thanks for listening.
God bless.Hi,
I am a patient of cc for 2years.
Some times hot spots may mean just inflammation of the area of concern,
Can you get a MRI with contrast to confirm it or get a 2nd opinion of radiology consultation from another institution to confirm the findings?
Depend on what kind of CC,intrahepatic Cc or ductal cc (ie: Hilar); treatment plans and choices will be different. My guess is that your husband has ductal CC,so besides chemo therapy,PDT or clinical trials will be other choices.
God bless.Hi,Peggy,
Please keep us inform about the oncologist new treatment plans.
I Strongly recommend you to seek a 2nd opinion even if not John Hopkins.
God bless.Hi,All
I always think that whoever and what ever our members contribute to this web site,including the names of,the messages they put on this web site and the discussions they have with each other on this web site and their sugestions and personal info such as age,gender,stage of cancer etc. for all the past,current and future members will be the property of the cholangiocarcinoma once members post their info. on this web site.I am not a lawyer,but a 2nd opinion on the” legal matter question” may be needed to clarify “Is all the info. provided by our willingly members are the property of the CC web site? “;or can the web site put a notice out saying that once you sign on to this web site, all the info. will become the property of the cholangiocarnona foundation and does not need any consent to use the info that submited by members.And for the past and present members who already here ,this web site can post a notice for our members to agree or disagree the disclosure policy and if they agree ,then we can start a small request like Just-jill or Lainy suggested or do some findings of our current members who have cc. If some don’t ,then we just omit them in our research in the future.
I thing it is fun and useful to know our members more.After all we are a special family. But most if not all ,it may provide info. that may help all of us in the long run.
God bless.Hi,
I agreed with your suggestion;I did submit for a similar request for the population of cc patients here a while ago. I think the board still consider about whether we have enough manpower to do the survey that I suggested or it may not be a survey that are looking for and the legal aspects of the survey.(my is a bit longer,about 2pages long).Yours seems to be much easier to do.
My personal thought about CC is that,even 2 patients have the same time frame,same diagnosis,same size of the CC, same location,same treatment, same caretaker etc. the outcome for each of the patient will be still different. I do not know why I have that kind of intuition but even so,it will not hampered my research on CC.
I know one thing for sure,if I try my best I will have no regret.God bless.
God bless.Hi,Marion,
Of course,that is why I volunteer for what I am doing now here;same as for many people on this web site contribute their time and energy for what they can to help others.
God bless.Hi,
I am also a patient of CC.
If i may ask,how old is your mother? How is her current health status(other health issues besides CC)?These are risk factors in determining treatment plans.
Based on your info,the CC have metastasized to the intestine and therefore surgery is no longer an option.
When she had confusion,did she on pain medications like Norco because of the bile drain(stent)?
You mentioned your mother was on Gemzar and responded well with the treatment;did she just received Gemzar alone as mono therapy or Gemzar plus other chemo agents?Second opinions on Oncology consultation and interventional radiology consultation are needed in your case to provide your mom more treatment options since there are still other chemo agents and radiological interventions that can be used to control or even shrink the CC for your mom if they are not contraindicated to your mom’s case. I agree with Lainy for the hospitals she mentioned which are specialized in CC.
God bless.Hi,
The best way to find out is to make an appointment with John Hopkins,indicated that you need a ” REVIEW and 2nd opinion on current treatment plan provided by the other hospital and oncologist.”
John Hopkins is ranked the #1 hospital OVERALL for the past 15-20 years.So they should be able to provide you the overall review and opinion for your dad’s CC by medical oncologist and radiologist there.Bring all the CTscan (not only the reports but the copied disc) and your current oncology treatment protocol to John Hopkins.If you are not sure what to bring,ask JH on the phone when making the appointment.Do it ASAP if you can.
God bless.
God bless.Hi,
Your husband feels very tired because of Avastin.
How many cycles of Gemzar/cis/Avastin did your husband have?
If he started the Gem/cis/avastin since Jan.4 2011;then it looks like the chemo is not working. There are other chemo medications available for treating CC; so please make an appointment with John Hopkins as soon as possible for consultation.John Hopkins has the #1 hospital overall ranking for the past 20 years in a row by US News & World Reports.Your husband will be in good hands there.
God bless.Hi,
I strongly suggest that you should seek a second oncology consultation for your husband’s CC. Depends on where you live,MD Anderson in Texas;John Hopkins on the East coast,Mayo Clinics in Minnesota or University of California at San Francisco on the west coast are among the few that is well known to treat CC .
In short,you need specialists to see your husband, NP or GP are not enough.
Base on information you provided,the current chemo therapy did not shrink or control your husband’ CC if what you said”The report kept mentioning different lymph nodes and more nodules—on lungs”is what the most current report indicated as compared to the last CT.
Yes,CC can spread to lungs,abdomen,bone, and liver. Since the information you provided for your husband ‘s CC is very limited,most likely your husband will be benefited from clinical trials of chemo treatment provided by the above medical institutions.
God bless.Hi,
This is for informational purpose only.
For gas,I will take simethicone(Mylicon) 80mg-an antiflatulent,four times daily.
God bless.Hi,Jillybean,
I am a CC patient for the past 2 years.
If you can,please let your husband know that alternative therapies such as massage,spiritual healing,relaxation techniques,Yoga and meditation,guided imagery and hydrotherapy,vitamins and supplements ,nutrition and diet will work up to a limited extent;and at this stage of the game for your husband,(my guest is stage 3 if no metastasis to other parts of the body ),it will take time to separate and choose the ones that fit your husband the best.
He is only 58 years old;even though he is weak and may have ascites;Chemo therapy will offer the best hope for him.Nowadays,chemo medications and much better than just 5 years ago in terms of outcome and control of side effects.
The responses to chemo therapy for each patient are different;your husband has CC and his friend had pancreatic cancer;the treatment plans are different. In terms of treatment,for example Pancreatic Ca requires weekly Gemzar for 7 weeks in a row as mono therapy but for CC ,it only requires weekly Gemzar weekly for 3 weeks in a row and rest for 1 week;much easier to take.;and the side effects are very little if any.I took Gemzar for 14 months and I should know.
I will encourage him to take chemo as soon as possible as suggested by your doctor while you and your husband search for alternative .
The oncologist will prescribe Lasix or Aldactone for your husband’s ascites which is needed to take care of as soon as possible.
God bless.
