Life Unafraid - Metastatic Cholangiocarcinoma

Battle Begins - May 31st 2012

Today my mom starts chemo. She said this pneumonia is bugging her mostly and is going to talk with the doctors about antibiotics. She also wanted to let you guys know that she's going to attack and kill this cancer head on - go mom!

-Mike

Chemo starts - May 30th, 2012

Hey all. Tomorrow is a big day for my mom. Chemo starts tomorrow. Please extend prayers. I'm short of words right now, but do not worry. Cast your anxieties on the Lord. All is well. If you know me and my brother - you know my mom can put up a good fight. She raised both of us. She's the strongest woman I've ever met. Love you mom.

-Mike

Update - May 29th 2012

Moms home now resting. The procedure went well. She's really sore and bummed that she can't sew for a while, but all is well. One step down the road to healing.

-Mike

Chemo Port, Prayers for Mom - May 29th 2012

My mom is going for an outpatient procedure at 7am to have a chemo port installed. My mom has been through a lot of suffering and physical pain lately - please extend your prayers today for a quick and painless recovery. Thank you, -Mike

Chemo Drugs

My arm is aching and tender (sigh) and I am still coughing.  I just took some tylenol to take the edge off.  I did end up looking up the potential side effects from the drugs they plan on administering to me.  Here they are minus the less common ones:

Oxaliplatin Side Effects:

Important things to remember about Oxaliplatin side effects:

• Most people do not experience all of the Oxaliplatin side effects listed.
• Oxaliplatin side effects are often predictable in terms of their onset and duration.
• Oxaliplatin side effects are almost always reversible and will go away after treatment is complete.
• There are many options to help minimize or prevent Oxaliplatin side effects.  
• There is no relationship between the presence or severity of Oxaliplatin side effects and the effectiveness of Oxaliplatin.

Oxaliplatin Infusion Related Side Effects:

• The feeling of difficulty swallowing, shortness of breath, jaw spasm, abnormal tongue sensation and feeling of chest pressure.  This has been reported rarely (<5%).  It generally starts within hours of Oxaliplatin infusion and often occurs upon exposure to cold.  Avoiding exposure to cold (see self care tips below) helps to prevent this adverse reaction.  Future Oxaliplatin infusions may be given over a longer time frame to help reduce the incidence.  

The following Oxaliplatin side effects are common (occurring in greater than 30%) for patients taking Oxaliplatin:

• Peripheral neuropathy - Numbness and tingling and cramping of the hands or feet often triggered by cold.  This symptom will generally lessen or go away between treatments, however as the number of treatments increase the numbness and tingling will take longer to lessen or go away. Your health care professional will monitor this symptom with you and adjust your dose accordingly.
• Nausea and vomiting
• Diarrhea
• Mouth sores
• Low blood counts - Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.
• Fatigue
• Loss of appetite

Gemzar Side Effects:

Important things to remember about Gemzar side effects:

• Most people do not experience all of the Gemzar side effects listed.
• Gemzar side effects are often predictable in terms of their onset, duration and severity.
• Gemzar side effects are almost always reversible and will go away after treatment is complete.
• There are many options to help minimize or prevent Gemzar side effects.
• There is no relationship between the presence or severity of Gemzar side effects and the effectiveness of Gemzar.

The following Gemzar side effects are common (occurring in more than 30%) for patients taking Gemzar:

• Flu-like symptoms (muscle pain, fever, headache, chills, fatigue)
• Fever  (within 6-12 hours of first dose)
• Fatigue
• Nausea (mild)
• Vomiting
• Poor appetite
• Skin rash
• Low blood counts.  Your white and red blood cells and platelets may temporarily decrease.  This can put you at increased risk for infection, anemia and/or bleeding.

Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.

Onset: none noted
Nadir: 10-14 days
Recovery: day 21

• Temporary increases in liver enzymes
• Blood or protein in the urine

These are less common Gemzar side effects (occurring in 10-29%) for patients receiving Gemzar:

• Diarrhea
• Weakness
• Hair loss
• Mouth sores
• Difficulty sleeping
• Shortness of breath (see lung problems)

Here is to a side-effect free experience! 

 

Update

Just got back from the surgeon who installed the fistula - he said that yes, it's trombosed due to the cancer and it's inflammed (phlebitis).  He will check it again on Thursday and if it's not improving he will go in and surgically remove the clots - he said it's quite painfull but then again so is the port going in so that is what pain meds are for, right?   I really don't like pain pills they make me feel icky but if they help.    While I was in the parking lot at Saddleback I recieved a call from UCLA - my chemo starts on May 31st... next week Thursday..... yikes! And GREAT!  Let's get this show on the road shall we? It's only been since March 5th when I made that first trip to ER after a little coaching from my boss.  So time is running out if you want to see me with hair ;-) .....   or you'll just have to wait until after the chemo knocks the cancer into full remission and I have no more treatments.   The name of the drugs I will be givin are: Gemzar and Oxaliplapin.  Guess what? I am not even looking up the possibe side effects.. why?   For those of you know that know me well know that it is so outside of my nature not to be as knowledgable and pre-planned as I can be.  It feels good.  Why spend time doing all that research when my body is going to respond however it does or does not to potential side-effects?   Anyway.... thanks for reading and staying up to date and mostly for the positive thoughts and prayers - keep 'em coming?  I am grateful to have such amazing friends & family. 

The Medical Action Plan

So this morning I woke up and my fistula (you know the thing in my arm that was supposed to be for dialyses but never got used??) was throbbing and tender sore - the thrill (pulse of blood flowing, noise like a cat puring) was gone too.   Since I already had a consult scheduled with a surgeon today I let him look at it and he sent me right to the place I had it done at to get an ultrasound. Basically it's nothing to worry about but it clogged.  The technical term is "thrombosed".  So it can't be used but I don't need it anyway.  3 people looked at it in the ultrasound and the conclusion is it should be ok but I need to go back tomorrow morning and have them look at it again.  They drew a line in sharpie marker where it's red and swollen and will watch it.   It's supposed to go away on it's own.   So... tomorrow morning it's back to the vein doc and in the afternoon my nephrologist - I am taking around round of anitbiotics because I still have a cough even though the doctors (again today) say my lungs sound great.   OK so the plan... this week on Thursday I get a CT scan & Saturday a PT scan (I mentioned this already) - NEXT Tuesday I have surgery to get the chemo port put in. The surgeon said that I should expect it to hurt after... what's a little more pain?  ...  AND.. the big news is that I am scheduled to start chemotherapy the first week in June.   I was hoping to have a few days of feeling decent before that happened but that might not be in the cards for me.  So be it.   I am going to start chemp up at UCLA. The local doctor did not feel comfortable treatment me (my grandma always said if you don't have anything nice to say...) ....  seriously I do appreciate his honesty.    The drives to UCLA will be grueling but I will have great care no doubt.   Maybe after it all gets going I can transfer to a chemo center locally.  I think the experts at UCLA can put together the plan and someone local can execute it.  We shall see.  So really - I have no idea what to expect and didn't feel like looking it all up online.  Believe it? It's true.  I am actually going with the flow so to speak.  I am in good hands.  I am learning to trust fully.  I know I am not in control of this outcome - only my part.  As I mentioned I am going to beat this - the chemo will work if not a miracle before hand.   

Ver similar beginnings

Wow.  She survived.  She is at the end of her chemo journey beginning a new life without cancer..  I am at the beginning ...  these 1st 3 months of chemo will work wonders!   http://thecancerassassin.blogspot.com/

Checking In

Hi friends & family ... it's me, Yolanda.  Thank you for all your continued support and prayers.  I just thought I'd give a quick update.   Next week is a busy one, preparing for chemotherapy.  I have a consultation with a surgeon on Monday, to get the chemo port installed.  I don't think that will be a big deal - just an outpatient minor surgery.  I remember when I had my transplant I learned about those - they go right under your chest.  I think once you have one, you can't swim in a pool or the ocean until it's removed/healed.   Thursday I get more CT scans with contrast (yuk) and Saturday is the PT scan - that is the one where they inject you with glucose and scan your whole body to see where the bad cells are.   I am praying they only find what they already found - a lesion in my bile duct and a small mass in my lower left abdomen.   I am actually praying that by the time I get the scan my body is healed and they say "it must be a miracle!" - it could happen.  Even if it does not I know the chemo will work.  I am still suffering from a cough and I am off the antibiotics.  Monday or Tuesday I will get another chest xray and see.  Energy wise I am pretty drained and that is bumming me out.   So hey if you want to see me before I lose my hair, let me know ;-)  Should I get a wig or wear pretty caps and beanies?   Oh and people keep asking what stage - my answer is that it really does not matter what stage because I will be healed no matter where it is now.   Got that? I've always heard that God will never give you more then you can handle.....   so I am pretty much at rock bottom as far as coping .. what does that mean? I think it means God has me right where he wants me and it's all up from here.  Don't you agree?  

More Details And Starting The Process - May 18th 2012

Here is the latest - the technical term for the diagnosis is; metastatic cholangiocarcinoma. Which is basically bile duct cancer that has spread.

My mom met with the oncologist and it was a true blessing that she told me she really acknowledged the presence of God who was there with her giving her peace. The oncologist had answered every question of hers before she had a chance to ask. He had also prepared a significant amount ahead of time in preparation for their meet by contacting all of the related doctors involved and getting the complete history. A very good sign.

No doubt this will be a challenging battle. One of my co-workers is currently on medical leave for a very similar, if not the same cancer. He reached out to me and told me that everything will be just fine with my mom, and that all she will need is strength to get through the motions. I know she will be just fine.

So for the logistics; the short term plan is to get a PET scan, get chemo port, get plastic stent replaced with a metal permenant one, get a chest X-ray, and start chemo ....no order here ... The chemo will be in OC and ucla is reviewing treatment plan and scans for 2nd opinion and coolaboration with OC oncologist.

Keep those prayers coming. Thank you all for your love.

-Mike