pcl1029

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  • in reply to: question about metastatic cc #40861
    pcl1029
    Member

    Hi,
    May I suggest to-get a PET/CT to determine whether the lesion is cancerous or not;may be the lesion is just a blood vessel or other structure that appear as a lesion on the MRI and is too small or for other reason that CT scan could not pick it up. That was the same situation happened to me in my second resection.
    Turn out to be atypical lesion and I regret not to have a PET/CT first.
    God bless.

    in reply to: Chemo aftereffects #53898
    pcl1029
    Member

    Hi,
    The oncologist will draw lab first to determine whether the platelets is too low to start Gemzar(normally if it is <50,000 ,they will not start Gemzar;some doctor will not give Gemzar if the platelets<75000)Gemzar is known for decreasing the platelets counts but I am sure the oncologist will do labs(CBC) befrore given the chemo. I ,myself do not have any platelets problems during the 14 months treatment of Gemzar.
    My suggestion is quality over quantity for your dad esp. he has had both radiation and chemo not long ago.
    God bless.

    in reply to: What next? #53922
    pcl1029
    Member

    Hi,
    Yes, the oncologist will give zofran and/or dexamethasone IVPB as pre-med for helping the nausea/vomiting. But I did have headache because of the high dose of Zofran; they cut the dose down but I just did not feel right in my head anyway, I felt my head was swollen;but that is how the Zofran works to control the nausea/vomiting .I did vomit after I drove home from the hospital of the later part of my 14 months Gemzar treatment. I did not have the vomiting problem when I started the Gemzar ;but I did have the headache (minor) and the swollen head feeling starting at the second or third dose.
    And I did feel a little tired and that is why I always go to bed right away after my chemo treatment.(that is ,I took Benadryl 50mg and Ibuprofen 600mg right after I went home after Gemzar;if I vomited it out I will take another duplicated dose so I could go to sleep ,usually within 30-60min, and woke up 3-4hr after;then I felt much better; the whole thing last for a day or two and I would be back to normal again.)
    But please remember I was 59 years old at that time and had diagnosis of intrahepatic CC stage II and started the Gemzar as the only treatment just 2 months after liver resection.
    Please read the side effects forum about” suggestions for medication for nausea/vomiting.”to gain insights about the medications.
    Again, you should also know that Gemzar chemo treatment is not for CURE;
    It may work or it may not.
    God bless.

    in reply to: What next? #53917
    pcl1029
    Member

    Hi,
    I will listen to the advice that “the one physician who have known your dad for over a dozen years” gives to your father. His Key word is “his reserve may be gone.”
    Even if your father will like to try the chemo,he needs to wait for at least a couple months after surgery to let the surgical wound to heal and regain his strength.
    I am 61 ,have intrahepatic CC for 30 months and was on Gemzar for 14 months and was no fun at all even I did not have any serious side effects from the chemo.
    I STRONGLY agree with Lainy about choosing quality over quantity for her husband and they got five years of quality time.
    God bless.

    in reply to: treatment with oxaliplatin and 5 fu for husband tom #53862
    pcl1029
    Member

    Hi,
    This side effect may be dose limiting; ,76%;acute 65%;persistent 43%.
    “Two different types of neuropathy may occur;First,an acute(within 2 days),
    reversible (resolves within 14 days),with primarily peripheral symptoms that are of exacerbated by cold ; avoid mucositis prophylaxis with ice chips during oxalipation infusion.
    Secondly, a more persistent(>14days) presentation that often interferes with daily activities (ie: writing,buttoning swallowing), these symptoms may improve upon discontinuing treatment.—from drug information handbook 16th edition,APHA.

    in reply to: Clean so far (sort of …) #47949
    pcl1029
    Member

    Hi,Jim,
    My first resection was done 6/09.
    My second one was done on 6/11.
    Even I THINK I know what to do with this disease; I actually don’t.
    I learn,I ask, I think with all those info.that we find,NONE is preventive(that is how to avoid the recurrence after we aware of our disease);so as a patient like you and me, in reality, CC is a waiting game more than current medical knowledge know how can provide cure or meaningful extension of our lives back to normal. We hope ,we cross our fingers,we pray instead.
    Then again, as the bible said—suffering produces perseverance,perseverance produces hope and hope—.
    God bless.

    in reply to: Clean so far (sort of …) #47947
    pcl1029
    Member

    H,Jim,
    Good luck and God bless .

    in reply to: Shock and augh! #53624
    pcl1029
    Member

    Hi,Rob,
    May I ask how old are you?
    In general, ultrasound (US)result highly depend on the person’s experience and technique who performed the US; If something is not clear ,CT or MRI to follow is the recommendation.
    Anyway,CC mostly is a slow growing cancer.For example ,in my situation,in 6month,base on CT report and MRI results,it grows from 0 to1.5cm biaxial in 6months and again from 1.5cm to 2.3cm biaxial in another 6 month.But of course,you have to considered the cut’s thickness of the CT scan or MRI slides too before you really can determine how long you did have the CC.
    God bless.

    in reply to: Shock and augh! #53611
    pcl1029
    Member

    Hi,
    Yes, the PET scan will pick it up .
    God bless.

    in reply to: Experience with Erbitux #47980
    pcl1029
    Member

    Hi,
    Sorry to hear the news. Drug resistances are especially common among Molecularly targeted therapy;2nd opinion on switching to other different targeted agents to delay the progression of the disease is recommended or clinical trials may be the option as well as radiation treatment if not contraindicated.
    God bless.

    in reply to: Update on me #53753
    pcl1029
    Member

    Hi,
    Sorry to hear the news.I am a patient of CC for 30months,resected twice;like you,I am in the hospital medical profession .currently I am on Xeloda BID.
    My suggestion ,from one patient to another,from one medical professional to another is –Get to Mayo or MD Anderson ASAP,get a 2nd and/or 3rd opinion and see what they can do for you. Oral Xeloda lately becomes the popular regimen but if you qualify for clinical trials, you will be required 4-6 weeks off chemo before you will be qualified for the trials. So it may not be a good idea to start Xeloda .From the messages you posted in the past, it might suggested the Gemzar/cis regimen was not working; but you did not mention whether the liver CC is stable or getting worse.If it is stable,then when you go to Mayo,make sure the lung lesion is really mets of the CC or a completely different diagnosis for it.
    It is very difficult not to think about our diagnosis;it is not easy to ignore the fact that we are relatively healthy outside but deep inside ,as CC patients,we are actually sicker than most of the patients that we are taking care of everyday. We hope to find cure or easy way out of this horrible disease but deep down we know it will not be easy.We wish there are no recurrences after resections,but ….; All I can say to you is –this is a tough road to travel and we do need God’s Mercy and Grace to help us to understand His will and be hopeful.
    God bless.

    in reply to: My Dad #53719
    pcl1029
    Member

    Hi,
    The oncologist can give your dad neupogen to increase the white count(WBC).
    The doctor can drain out the fluids caused by ascites and give your dad Lasix or aldactone to control the symptoms.No pain is good ;waterly eyes? I am not sure it is related to the tumors.
    The best way to handle your dad’s situation MEDICALLY now is to wait for the CAT scan result due on next Tuesday.
    How long can you have with your dad timewise? really nobody can answer .But I know from what I have learned from this web site,there are 3,5,10 and 15 years survivors out there.BTW,I am a patient of this disease for the past 30 months and I still feel very normal.
    I am not good at providing answers for the more tough questions with regard to how to handle the situation between you and your dad.But I am sure the more senior caregivers will come on board shortly and help you out on this.
    God bless.

    in reply to: Staring a new clinical trial..HELP #52676
    pcl1029
    Member

    Hi,Peggy,
    You are always welcome.
    God bless.

    in reply to: To Chemo or not to Chemo #53354
    pcl1029
    Member

    Hi,Sowfi,
    “From these test they thought the the masses on her liver was secondary liver cancer. The masses were quite large. On the left there is a mass that occupies most of that side, there is also a mass in the IVa segment measuring 3.8 x 2.1cm…and then lots of little cysts on her right lobe about 1.1 cm. So yeah.. her liver wasn’t look that great!Now, although they could confirm that the liver masses was cancer… they couldn’t find a primary………
    After a few more months of testing and prodding, they came to the agreement that the primary came from the bile duct… Which i just couldn’t understand due to the fact that they are no lesions of masses there… I asked if they could do a biopsy on the bile duct to confirm there diagnoses, but was refused because they said that they want anything to biopsy… there were no masses on the bile duct!!!..
    So i ask… how can they confirm that she has primary Bile duct cancer, when there isn’t anything there???!!! This is something that we both have been wondering about… and they still haven’t given us a proper answer… so how can they be so sure….can anyone out there help with my question??!!!”

    To answer this question,please think about the entire bile duct system like a big oak tree in winter without leaves; there are lots lots of the little bile ducts in the liver(like the top branches or twigs of the tree) which where all the bile ducts started.The large bile ducts ie; the left and right hepatic bile ducts where Hilar CC located are like the large branches of the tree and the largest bile duct which is called the common bile duct is like the main trunk of the tree.
    Therefore if the tumor originated from the small bile ducts inside the liver,then the cancer will be called bile duct cancer or to be more accurate,should called intrahepatic cholangiocarcinoma.
    I hope the above info.helps.
    God bless.

    in reply to: Staring a new clinical trial..HELP #52672
    pcl1029
    Member

    Hi,Peggy,
    I did look over your husband’s messages entries a bit.
    58 year old,stage IV ICC started 3 years ago;resection 70% of the liver;chemo 5FU for 17 cycles before allergy occur.took a chemo break change to Gemzar/cisplatin and later with Avastin add to the regimen;bleeding occur, off treatment,restarted chemo;8/2011 and October scan are OK with no change (stable) and Dr. Wong recommended to use oral Xeloda.

    The concern that I have for your husband is below.
    If possible, please mention to Dr. Wong your husband may be allergic to IV 5FU as you indicated in one of your message;and Xeloda is a prodrug of 5FU.meaning that after taking the Xeloda,it will change(metabolized) to 5FU inside the body to destroy the DNA inside the cholangiocarcinoma cancer cells.

    Sometimes the allergic reaction of IV 5FU may be just because of the IV infusion of the 5FU and may not be the actual allergy of 5FU the drug itself. But if any allergic reaction like hives ,severe itching,shortness of breath(SOB),sensation of throat closing,abdominal cramping and fainting,you should consult doctor before starting of Xeloda.Even if not,it still a good idea to mention to Dr.Wong about the allergic situation to him for safety concern. I hope you will agree with my concern for your husband.
    God bless.

Viewing 15 posts - 1,396 through 1,410 (of 1,667 total)