pcl1029
Forum Replies Created
-
Posts
-
Hi, Margaret,
Thanks for your thoughts and prayers.
I am sorry for your loss of your husband too.
I was diagnosis 34months ago,and I know if God wants, He can call me up anytime. i know my effort on this web site to help to relief the suffering of this disease is minimum at best., but hopefully I can be of an EXAMPLE for others to follow, to keep on trying, knowing that the combining effort toward the same goal will eventually make the dream come true .It may just take longer .
I saw what had happened to my sister-in-law in the final days;I talked to the doctors to gain more insights about this disease;I watched and learned about the whole process knowing that the last stage of this disease;the event, could be of value for me as well.
I watch so many patients dieing in my career;but please forgive me to say the following.(please remember I am still emotionally insane at this moment and not the one that all of you get used to before.)For me, Dieing fast(like having a full stroke) is much better than this inhumane prolonging , emotional rollercoaster ride of this disease.
God bless.Hi,Eli
“Being the diligent researcher that I am,— ” ; so Eli,
You ,as always, will continue to be one of this web site valuable asset;
Thanks for your contribution,and make sure you take good care of your wife FIRST.
God bless.
Hi, everyone,
Thanks for your messages to calm our hearts and relax our mines in my family.
I will be fine,just need a couple more days to get back my energy.
I am exhausted both physically and emotionally.;physically because I was the medical guy to my brother-in-law;emotionally because I am ,as most of you know by now,also have the same disease as my sister-in-law.But life is too short and I need to be hurry back to reality and try my best to do what I can to minimize the suffering of this disease–cholangiocarcinoma.
God bless.
HI,Deb_,
I sincerely feel your pain,your suffering and truly understand what you are going through.
I lost my sister-in-law 2days ago at hospice care;she had just admitted 4days ago. Like you,my wife and our family were lucky enough to communicate with her before she totally unresponsive.
My wife right now is still in the denying stage;the two sisters were very closed;
and that affected our entire family emotionally a lot.But let me quote our moderator Lainy the poem she wrote to comfort me and i hope you will find peace and comfort to calm your heart; the strength and purpose to go on with life ; and the courage to carry on your husband’s dream to care for his children especially his princess that he cared.“Those we love must someday pass beyond our present sight…
They leave us and the world we know without their radiant light.
But we know that like a candle their lovely light will shine
To brighten up another place more perfect…more divine.
And in the realm of Heaven where they shine so warm and bright,
Our loved ones live forevermore in God’s eternal light.”God bless.
Hi,Les,
I am an intrahepatic CCA patient ,63 years male, for 34 months ,so there is hope for your wife because of the age factor is on her side.
The increase of WBC is NOT the common occurrence for this disease.In fact neutropenia (decrease of WBC) and anemia are side effects of the GEM/CIS chemotherapy.
Acute Renal Failure (ARF) is the major side effect of cisplatin and the toxicity is dose related and accumulative and therefore cisplatin should be discontinued; Kidney dialysis is NOT part of the expected journey at this stage of treatment plans.
I am not a doctor,and the suggestions by your many MDs in your family may be better than my observation.
I think the increase of the WBC is related to the damage done to the kidney by the cisplatin over the course of treatment since cisplatin nephrotoxicity can be progressive.
I do not think MDA will continue the GEM/CIS after your wife’s recovery of kidney failure and the leucocytosis.
Avastin may be of use in Abdominal metastasis (ie: peritoneal carcinometosis).
With regard to expectation and management of this disease; I will reserve my comment until I know more about your wife’s condition after the current unexpected event.
God bless.Hi,
The best way is to ask your sister to contact the surgical consult ,the liver specialist,at Mayo,who she consulted and see whether they will recommend the doctor that will perform surgery on your sister at LaCrosse Wis. that is the best way to find out from his peers of that speciality.
One of my radiologist is from India, another GI specialist is from Iran,another radiologist is from Greek, and one of the surgeon that assist the liver surgeon is from Far east.the anesthetic assistant is from India so as three of my oncologists. I think where they graduated is not as important as their experience.
If they are board certified for their speciality,they should be good enough. But if they are recommended or recognized by their peers,that is even better.
In addition, one of the most important thing is whether she like her doctor,that helps a lot too.
God bless.Hi,
The reason for giving Gemzar not longer than 30 min. is the concern of the increase toxicity if given longer than 30min.Longer infusion rate(ie:>70min.) resulted in 2-fold increase of peak Gemzar cell concentration than the same dose given over 30 min.
The half-life (the time that half of the dose is eliminated from the body)of Gemzar is affected by the duration of infusion,age(older patient takes longer to get rid of the drug),and gender(men are almost 1/3 faster in elimination of the drug than women) due to the changes in the volume of distribution and clearance. Up to 98% of the Gemzar is excreted through the kidney.—- from http://www.clinical pharmacology 2012.
God bless.Hi,
I do not have any experience about PVT;
But I know from what I have read about PVT; the PVT will increase the portal blood pressure due to the obstruction of the blood flow and result in portal hypertension. Symptoms may include hypertensive bleeding ,abdominal pain,GI varices,ascites.
Anticoagulation did not decrease the risk of bleeding;it decreased the risk for additional thrombotic events in other circulatory areas.
God bless.Hi,
I hope everything is well with you with regard to your pursuit of radioembolization.
I was told by the radiologist it may take up to a month to get the approval of the insurance company;so be prepare for that since it is mostly out of the liver treatment protocol and the radiologist has to talk back and forth to prove or justify each case.I read about a dozen articles and found no big difference in using glass or resin microspheres(SIR-Spheres) ;The tumor response rate vary from 20-42% for the glass and from 23-44% for resin microspheres.But if you count the total tumor RESPONSE rate and the stable (NO Change) rate together;the total DISEASE CONTROL rate is very good at 75% even though it is not a cure.But it will buy a couple years of qualify of life without suffering the continuous side effects of the chemotherapy and targeted therapy agents . And hopefully by that time the research results of this cancer will catch up the disease and free us,the patients,forever.
Keep us inform please;and in turn you will help all of us in fighting this disease. No body wants to be here on this board,but if we had been chosen by the higher authority to do so , we have to obey and try our best to help the fellow patients in every way that we can no matter where they are on this earth until otherwise. And I know you will always be one of the pioneer in helping all of us.good luck and
God bless.Hi,
The only way to answer your question is through a multidisciplinary medical team that consist of a hepatologist,a medical oncologist, an interventional radiologist and a liver surgeon.
For better understanding about CCA ,please listen to the audio webinar discussion post on this site by Marion on MD Anderson on cholangiocarcinoma just to-day.
God bless.Hi,
Excedrin contains both aspirin and Tylenol when taking together,it will provide “synergistic effects” for the combo;in short, it is a little beter than taking either separately.
I also ask my oncologist about the order of administration of Gemzar and cisplatin;he told me it really doesn’t matter; most of the time if cisplatin given first;it may just because if given the cisplatin first,theTOTAL time of administration will be shorter for the patient for giveing bothe drugs. that all.
God bless.Hi,
If you CCA still confined in the liver and not metastasized to other parts of the body; try to talk to the radiologist who performed the SBRT for you and get a 2nd opinion on whether radioembolization is an option for you It’s side effects are fatigue,which last for a week to 10 days and nausea too.but compare to the chemotherapy the side effects are short term and the quality of life is much better. You can still have chemotherapy if the radioembolization is not successful .the overall response rate is about 46% but if you count together with the stable response , the disease control rate is around 75% depending on the tumor burden ( how many tumors and how big they are). I definitely will ask for this as whether is an option for me as an intrahepatic CCA patient.
God bless.Hi,
I don’t know about the numbness, but most likely you are right that it is from the side effects of the oxaliplatin .With regard to Xeloda, I do feel my legs being tired easily; and I can feel the pain starting coming out from my calf slowly after the 5th cycle, So I asked and got Lovenox for DVT prophylaxis. SOB is another problem but It is not to a point that I cannot take. I do labs every two weeks to a month,so far platelets are in the 170-220 range,the neutrophil are in the 40-50 range. ( low but not too bad) and of course the WBC is a bit lower in the 5 plus range.all the ALT,AST ALK PHOS are in normal range.Albumin is in the 4-4.5 range; the RBC is always on the low side 4.1-4.3 range; HGB is around 14. Bilirubin is between 0.4-0.8 nothing abnormal. BUN/Creatinine is normal at at around 20/1.3 level. When I started the Xeloda, I asked and got the C- reactive protein done as the base line for inflammation and it is within the normal range.
I do CMP,CBC,CA19-9 CEA mg++ ,phosphorus and Lipid profile once a month. If I feel something is different,I will do CBC and CMP q2weeks.
I am on Xeloda and I start my 7th cycle today. So far so good,except dry skin on both feet and a brown ring around the bottom of the 2big toe( the side effected of the XEloda on nails dis coloring and being brittle) Fatigue is a problem and that may be one of the reason I feel SOB after a day’s work in the hospital.
God bless.Hi,
I will ask them,the nurses why.and talk to the doctor personally on the next appointment for the reason. I will be surprised if you did not get sick ;it is too fast unless your dose is very low. what is the dose on the chemo bag for Gemar? less than 1000mg?
God bless.
Hi,
your wrote
“Her Oncologist ordered specifically for her to receive Cisplatin 1st as opposed to their usual routine of Gemzar then Cisplatin. This was also clarified by the nurse. Apparently, there has been a study/clinical trial done sometime in 2011 regarding this matter.”In my opinion,the only regimen(Taxol/Cisplatin or oxaliplatin and carboplatin) that may use for liver or CCA is the only chemotherapy regimen that required a specific order of adminstration. that is Taxol first and cisplatin later for the maximum benefit.if you want ,you can go the the experience forum look under the chemo forum title:Hey percy,could you—-” and you will have a general knowledge about each chemo agent;also look under title”systemic chemotherapy” for the combination regimens; for controlling nausea/vomiting ,go to the adverse reaction and side effects forum look under:”suggestion for medication for nausea and vomiting “
I look up the oncology nursing handbook as well as a couple regimen protocols from univ. of Pitt and another univ. out patient chemotherapy clinic; and the hospital I had my chemotherapy before; All are giving the pre-med zofran first,then give the gemcitabine over 30 min;Iv 0.9% sodium cholide for hydration and then give you the cisplatin over 2 hours.;
sometimes longer. Inside the cisplatin bag;they also add the manitrol (a diuretic)to facilitate the kidney function to deal with the toxic effect that will caused by the cisplatin.And after you finish the whole infusion;they will ask a you to drink more fluids (4-6glass of 8oz) to help flush out the cisplatin and protect your kidney better.When gemcitabine and cisplatin giving together they will have the so call “synergistic effects” for the combination of the two chemotherapy agents.
As you know I am not a doctor; I am only a patient,but I do not think the order of administration in CCA to give cisplatin first is that much a deal; I ,myself only will not change it since the order of administration that use now already provide the “synergistic effect” benefit and use for quite a long time.
However,the following link is very interesting and give you another opinion that support the current order of administration of gemcitabine first,then cisplatin.
http://www.cecilyadams.com/gemzar.htm
I love to know where your doctor got the idea; if you can find out the article for me,I appreciate.
God bless.
