Topic: Need some advice

Hello everyone! Hope everyone had a very merry Xmas.. My brother will be going to oncologist this Wednesday.  His last visit they were not able to give him chemo due to low blood counts.  We are praying that he be allowed to go back on his chemo cycles.  Considering this being my second go around with this cancer I am trying to be positive but I'm also being realistic.  In case Eddies blood levels are low again is there any oral chemo that they could give him?? Maybe something not as strong as the Gem/Cis cocktail??  I will not be attending appointment but I will be driving out to spend New Year's Day with him.  I did tell my sister in law I would ask all of you for some other options that she can discuss with doctor.  Any advice or suggestions would be great.

Love,
Annie

Annie
My momma may she rest in peace after her short but courageous battle with CC.  My brother my hero, may he fight CC with all of his strength.

Re: Need some advice

There is a shot that can be given to increase white blood counts. It is very expensive though most insurance will cover it. Maybe ask your oncologist. My sister who had breast cancer got it several times during her chemo. Sorry I don't know more. Anyone else?

Re: Need some advice

Hello Annie,

Hope your are doing well.Ginger my wife,I believe it was on her third chemo treatment got a blood transfusion.She went in for the chemo and they told her that they where going to give her the treatment but that she had to go to the hospital right after the chemo.She was in the hospital over night, had the transfusion and had a paransentisis. She was in the hospital for one night only.And believe me.It made a big huge difference on her,because she up and Christmas shopping two days after her chemo treatment.Good luck with your brother and Happy new year.

4 (edited by Pamela Mon, 31 Dec 2012 09:53:15)

Re: Need some advice

Hi Annie,

My daughter had the same problem when she was on Gem/Cis. She is now on Gemzar and an oral chemo called Xeloda. Xeloda makes her feel a little cruddy, but her counts aren't as bad. 5-FU is similar to Xeloda, but is administered over 48 hrs. with a pump. She was also on that with the Gem/Cis and had no problem with that. I hope this helps and your brother can find something he can tolerate. Remember that your oncologist will know what is best for your brother. Lauren's oncologist always gives her the option of doing what he suggests or what I mention to him. He always has good reasons to do what he recommends. So we listen to him every time! Take care.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Need some advice

Hi Annie,
My husband has this awful cancer too. He's on Oxaliplatin/5FU combo every 2 weeks. His labs are always fine and chemo proceeds. He seems to be tolerating it well. Your brother may need a change in chemo.  Also, he's had ascites since September and is now having paracentesis every week for 5-6 liters each time. So I would say that ascites does not indicate that the end is near.
Hope all goes well on Weds.  Stay strong.
                 Dianne

Re: Need some advice

Neulasta (pegfilgrastim) raises the white blood cell count.  I believe that this is what Holly was speaking of. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

7 (edited by PCL1029 Mon, 31 Dec 2012 09:07:29)

Re: Need some advice

Hi,Annie,
I think you should let the medical professional take care of your 46 old brother's situation first;let them to see what kind of medications he should take to increase the "blood count" before using injections to help boost the counts.
First, there are different injections for different conditions. I am not a doctor,but I know about injections in the pharmacy. You did not mention which one(ie; WBC,RBC Platelets,Hb etc.)that had low blood count in any of the messages you wrote on this board. You only mentioned about folic  acid and vitamin B12 prescribed by the doctor and most likely were for anemia .

"fluid in the belly" as you put it ,in general,will not affect that much in the decision making process for the oncologist. Up to 21 liters can be safely removed from the patients in the hospital setting without complications. However most of the amount that removed are much lower than that.

Intrahepatic bile duct cancer(the cancer started in the  bile ducts in side the liver) is what your brother has; it is different from the  liver cancer(ie: in cytology and histology when under the microscope.)

Missing one or two treatments may not make much of the difference in the plans of  oncology treatment. It may help your brothers "blood count" back to normal and can receive the chemotherapy.

Nobody can recommend oral chemotherapy to you except your oncologist; Oral chemotherapy agents and especially the  targeted therapy agents taken by mouth are potent medications( ie; both in effectiveness and side effects) and should not taken them lightly or think of them of  less potent than the IV formulation.

I hope my specific answers to your questions will help both of you and your brother  to develop a more positive attitude toward the treatments and outcome of this diseases.
Finally,I can only speak for myself, positive attitude helps me a lot in dealing with this cancer for the past 44 months; it change my outlook toward my disease  and helps me to start a new journey for the rest of my life. It is no fun,but take the best  that you can have  and prepare for the worse that you cannot control through communication with others and learn about the disease. You will never know what will lies ahead of you,but if you try, I am sure your effort in prolonging your brother's life will not be in vain.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Need some advice

I agree with Percy. A positive attitude is one of the most important things to have. Lauren has that every day in her fight with this cancer.

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Need some advice

Happy New Year!!!

Thank you all so much for the advice.
I realize ultimately its up to his oncologist to determine the correct course for my brothers treatment.  I just wanted some options that possible my sister in law can ask doctor about. 
I did get to see my brother yesterday.  Overall he looks good. The fluid in his belly has really gone down, he's a little thinner than normal but that's to be expected. 
The biggest issue we have is hopelessness and depression.  He stayed in his room a majority of the time I was there.  He cooked a gigantic meal for New Year's Day so I think he must feel somewhat ok.  It's so frustrating that he doesn't take advantage of the time he has now.  When reading the post by Percy I see that he maintains a positive attitude.  And I believe that is key.  Unfortunately I cannot get my brother on the same page.  But I realize that has to come from him.  I can only support him and be strong for him. 
His appointment is today at 815 am California time.  I am saying many prayers that his blood count is high enough for chemo. 

Thanks again.  I keep everyone in my prayers that are dealing with this!!! smile

Annie
My momma may she rest in peace after her short but courageous battle with CC.  My brother my hero, may he fight CC with all of his strength.

Re: Need some advice

Hi Annie!

Good luck to your brother this morning!

My Mom also has intrahepatic and couldn't receive her IV chemo last week due to low platelet counts....we made a choice/decision to count it as blessing so that her counts would improve and she could feel stronger for the next go-round!  That one small choice made a great improvement in her outlook this last week smile

We keep saying to each other..."it's all about perspective!"

Re: Need some advice

Well appointment was successful.  They gave him chemo but a lighter dosage of the combo.  His tumor markers originally started at 4000 but are at 1000. That's something to be grateful for.  Here is the new dilemma.  The doctor was still concerned with his blood levels.  He ordered a test to look into his antibodies??? I have no idea what that is.  Also, if the test comes back with a concern for the doctor he will do a bone marrow biopsy. Since I wasn't at the doctor I don't have the exact name of the disease he thinks it could be.  My sister in law said it started with an M and very long.  I found something online that could be it but again without knowing for certain it makes it hard.  I know many are probably thinking why don't I speak to the doctor or go to appointments?? I absolutely cannot.  When my Mom had CC I wasn't as involved because I was a bit younger and my Mom didn't want me to have to deal with it.  Well I was with her for two appointments.  Each time the news was horrendous and I will never be able to get the look on my Moms face out of my mind.  Therefore I am absolutely terrified and I just can't go.  Either way after talking to my brother he said Doc told him that there wasn't anything that could be done if the blood is bad.
I wanted to update everyone on the status of the appointment and just throw the new dilemma out there to see if anyone might have some experience with this.  This is the only outlet I have.  For tonight I will count my blessings and thank God for allowing chemo today.  Thanks for all the warm wishes hope everyone has a blessed night!

Annie
My momma may she rest in peace after her short but courageous battle with CC.  My brother my hero, may he fight CC with all of his strength.

Re: Need some advice

Anne...possibly your brother's doctor was speaking of Multiple myeloma?  Anne, Rick periodically clears out older postings in order to make room for the new (a website can only hold a certain amount of information) but I can tell you that in the seven years of existence, we have yet to see a patient diagnosed with CC and multiple myeloma.  Anything is possible, but given the extensive knowledge shared on this site, I expect and wish with all my heart that your brother's test will prove to be negative.
Depression and anxiety are not uncommon among people diagnosed with cancer. Stress is often a trigger for depression and anxiety, and cancer is one of the most stressful events a person may experience.  Hopefully your brother's doctor will address this.
Family members also have a risk of depression however; good communication helps. 
Have a good night, dear Anne.  You have a tidal wave of good wishes heading your way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER