Re: update on me

Regina, my head is always light headed, my memory is shot, I am not trusting my judgment, I have been getting depressed and NEVER have in my life. I am getting weaker, very tired, joints and muscles ache, bottom of feet get red and sometimes burn. With all the MEDs I have tried for U C I seem to reach a plateau and then stop healing. I AM going to try and push through for the Nov 1 infusion as it is the first 3 that really count most and that will be the 3rd. Then the 8th will see my GI. He has already told me there are other things I can try but Remicade is the best. This morning my daughter told me to pack a bag and come to her for awhile but I am just more comfortable being alone in my own place.
On the dreams, found out that Death actually means a new beginning but still don't know why there is another person who is alive in the dream. Mmm I wonder if Teddy is sending me these dreams but I can't figure out why.
I have not been to NYC in years but if you get too cold you are welcome here! Luv from the Space---y Cadet!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

27 (edited by holly22a Fri, 15 Nov 2013 20:52:46)

Re: update on me

Oh, it is so nice to have such friends along the way! Well, I did end up with back-to-back splenic embolizations --- one in sept. and one in oct. Pain upon pain, it is an awful surgery. They took just 30 %the first time, up to 65% the second, platelets look good so far -- hope to start a round of chemo this week. we will see. Meanwhile the tumors have followed the markers and now I have three over one cm.  sad

Re: update on me

holly....how great it is to hear from you.  Although it worked for you, I wish there had been a less painful way to jump start these platelets.  You are a very strong woman; so glad it is over.  Are you repeating the Gem/Cis combo?
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

Re: update on me

Can anyone tell me, in regards to a patient's platelet count, at what platelet level will the Dr. discontinue Chemo?  Do they ever just give patients platelet transfusions so that the patient can continue with the Chemo?  This is Ron's week off from Gem/Cis.  (3 weeks on, 1 week off)  A CBC was done yesterday and his Hgb is 7.6, RBC 2.5 and platelets 69.  I thought they would give him a unit of blood since he is so very tired, but the Dr. chose not to.  Any thoughts?

Re: update on me

In order to increase in the numbers of neutrophils Neulasta injections may be ordered.  However; generally, within a short time, platelets increase again.  Certain foods are supposed to aid in the production of white blood cells:
Vitamin C:  carrots, guava, oranges, berries and most fruits and vegetables.
Beta-carotene: Carrots are probably the most common source of this super vitamin. Other sources may include tomatoes, chili and squash.
Protein found in egg, fish, lean meats and dairy.
Good luck.
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

Re: update on me

Hi Snowbird,

When my daughter, Lauren, had chemo her platelets had to be 100 or over to get it. If hers was low, she would not be able to have it and her doctor would tell her to rest and be extra careful around sharp things. Low platelets can cause lots of bleeding if you get a cut. Lauren swore that Gatorade made her platelets go up, but her doctor always laughed at her and shook his head. It was probably just coincidence, but if she had to skip a chemo, she would drink lots of Gatorade and her platelets would be very good the next time. We asked about getting blood and her doctor did not agree with this. He said that platelets might increase for a bit, but they would drop right back down. Better to let you build them back up on your own. Different doctors have different thoughts on things, so I would check with Ron's doctor. All the best to you both.

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: update on me

Hi Holly,

I am sorry you had to endure such painful procedures and just wanted you to know that my prayers are with you.

Love and hugs,
-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: update on me

Had a delightful dinner with Regina in Dc yesterday with our guys, too. A four-and-a-half-hour- dinner. Lots to talk about, share, laugh about! I need that dose of tough optimism from her. Turns out her guy went to the same school I did and we had friends in common. The wonderful people we meet along the way! It's such a gift!

So anyway my news goes from bad to worse but hopefully will turn soon. My ca19-9 is over 20,000 (yes you read that right) and I have three tumors over 1 cm and many others. I had a back-to-back second partial splenic embolization (extremely painful arrgghh), lost another month while my cancer races to the endzone ....  and am now poised to see if I can try some more good ole gem/cis which worked so well for me a year ago. I shall have news by the week's end.

Meanwhile, my youngest daughter did go off to boarding school and has finally settled in and all five children will be home for both Thanksgiving and Christmas. My joy!!!!! I think of all of you here all the time and pray for us all to have release from this disease.
Love,
Holly

Re: update on me

Holly, amazing that you and Regina and spouses had dinner together. I have always said there is no feeling in the world like meeting a member of the CC family. One of the best RX there is. It's YOUR season coming up and I hope good things happen for you through out the season starting now! Remember this, if you feel your CC is racing to the end zone then your ONC needs to call interference and no field goal will do either as we want a touchdown! Looking forward to hearing some good news this weekend! Remember, you don't want to just survive you want to thrive!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: update on me

Thank you for the pep talk Lainie -- you are one of a kind!

So here's the deal about platelets, everybody, from what I have learned as a patient: 100 is about the minimum for most chemos and trials. Below that, no go. Any liver disease (cirrosis, hepatitis, cancer) can result in hypersplenism - enlarged spleen - and what is happening is the blood product (white cells, platelets, etc.) are sequestering in the spleen. Taking out up to 70% of the spleen through embolization will often kick out those hiding in the spleen. It is the established protocol and treatment for acquired thrombocytopenia (low platelets) for someone who needs to get back on the chemo wagon (yes, I am going back to cis/gem). Platelet transfusions only last a few hours - they use them for surgeries sometimes, but not to up your counts for chemo or a trial. the shot neupogen or whatever it is called (sorry) only brings up your white cell count, not platelets.

My platelets had been between 30 and 60 for months and clearly were not coming back on their own. I am pretty desperate to get back on chemo,hence the surgeries. Often they are done in two parts but you can also go all the way to 70% in one, which is what i wanted. I even yelled at the surgeon on the table when i heard him say they were stopping at 40% the first time! I knew it was not enough. So that's why I had two surgeries back to back.I guess they can be dangerous, in addition to painful.

I will know more soon. Love to all, Holly

Re: update on me

Love to you as well, dear Holly.  So nice to hear of your meeting with Regina and the upcoming togetherness with your family. Chemo is next and the tumors disappear.
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

Re: update on me

Holly,
I am so sorry for yiur pain. Praying for you.
Lisa

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

Re: update on me

Started chemo wednesday! Actually feel better every day I get away from those surgeries. Lower dosages of gem/cis than a year ago -- we might build up but for now I am happy to be back on the chemo that worked so well for me before. Thank you all, my friends, for being here through thick and thin. I cannot express enough my thanks and gratefulness for this place of love and healing.  -Holly

Re: update on me

Holly,

I'm so glad you're starting to feel better!!!  As I mentioned in my reply to you on another post, you truly do inspire me and help me to go on when I think I can't do it anymore.

Continue to stay strong and keep the faith!!!

Love & Peace,
Mary

Re: update on me

best wishes to you holly in the fight against this monster!

i have plenty of other names for CC-but none of them are
appropriate for this board. smile

dorien

Re: update on me

Dorien, beside calling cancer names I have decided to try NOT to capitalize any cancer words like cc anymore as it gives the monster too much respect!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.