Re: Survival...Please tell us your latest milestone

Cherry cake with almond, never tried that but sounds good!!! Carrot cake, sounds good too!  smile

Our cherry cake at new years is like a maderia cake sponge with glace cherries in it, yum! PLus of course oatcakes with cheese, can't beat that! Oatcakes and whisky, new years seems ages away!! Ha!!

All this talk of cake.... just as well I've had my tea, small pizza with tons of added dried chilli flakes on top as extra and served with pickled chillies on the side, mouths on fire still! Just what you need before the footie!

smile

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Survival...Please tell us your latest milestone

Lisa, that sounds tasty too.  Julie, I'm sure any cake that you make would be yummy.  smile

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

128 (edited by kris00j Sun, 13 Jul 2014 22:53:48)

Re: Survival...Please tell us your latest milestone

Since you are taking orders... The most sinfully chocolate chocolate fudge chocolate cake you can think of here!! big_smile

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Survival...Please tell us your latest milestone

Oh Yes!  smile

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Survival...Please tell us your latest milestone

smile   Sounds almost like I"m back in business.  Chocolate raspberry cake with chocolate truffle frosting and raspberry gel filling.  YUM!!!  Wish I could whip up and send off all those cake orders.  smile

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Survival...Please tell us your latest milestone

2 hours in the gym to work off a slice of Kris's chocolate cake me thinks!!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Survival...Please tell us your latest milestone

Two weeks ago, I finished round 6 of 4-6 rounds of Gem/Cis (as tolerated).  I had a very rough round 5 that knocked my blood counts for a loop, esp platelets and hemoglobin...so I ended up with two units of packed red blood cells transfusions. 

I took an extra week off between round 5 and 6, to see how well my counts might rebound before deciding to continue.  They did rebound well enough to go ahead.  My oncologist, however, reduced the percentage of dose by 25% so as to not have a repeat of round 5.  Still, last Wednesday, my platelets were only 42....and my white blood cells were well under normal with neutrophils also very, very low. 

Now, a week later, after having some breathing difficulties about 5-6 days ago, I had repeat blood labs and all the major things are in the normal or much better range.  Platelets and WBC and neutrophils are all back into the normal range...low normal...but normal.  Hemoglobin is at 9.2 ...which is anemic....but on the uptrend. 

So, during my consult today with my local oncologist, it was decided that my port will be removed....and I'm scheduled for that surgery next Monday, the 15th.  It was put in weird...kind of tilted sideways and always caused a problem ...and pain....to access.  I am thrilled to get rid of it.  It was also decided that I would not see my onc again for about a month....in early October...which will be about a month before I go to Rochester for my next 3 month scan. 

I'm planning a vacation with my husband.....and will indulge one of my favorite hobbies, genealogy...and another one...hand holding with my hubby (hopefully while walking through some beautiful Michigan and Pennsylvania and Tennessee countryside.).  Whatever the November scan shows...or any of the others to follow...I know I have done everything I could do (the adjuvant chemo....post surgery) to try to keep the cancer from returning.  There won't be any looking back and saying, "I should have....."   

On a personal note....my hair is almost gone on my scalp....esp on top...but new peach fuzz hair is already growing on top.  My eyebrow hairs...I could count how many are left of the original ones with both hands and a couple fingers to spare.  Seriously....3 hair on one side and 5 on the other.  However, new little sprouts of eyebrow hairs started growing last week and are a little longer this week...and there are more than I can count with my fingers....at the inside tip of the eyebrows....and just today I noticed several new sprouts about mid eyebrow.  My eyelashes...another story....most of them fell out....and no sign of any regrowth...unless what are left ARE regrowth...and just very short.   

People talk about "chemo hair", the new growth that tends to be coarser and maybe even curly.  The cancer cosmetologist at the cancer center today said that the short stuff on the top of my head looked like new growth to her....but it is not coarse...it is very downy and "fuzzy" like.  Wouldn't you know....the same as the stuff I was born with.....the same hair that stood up and out every which direction.  Sigh.  Oh well....I will be happy with just hair if that is the case and be glad about it.  I always wanted darker/thicker/and curly hair....but the new hair appears to be the med blonde color it was when I was born....same fine, thin hair.  Thought I might get rewarded for all the chemo crap with at least getting some good hair back....but I guess any hair is "good" hair at this point. 

Tonight at supper....I had on a ballcap with hair that is attached to the cap (very handy and fast).  I've worn it off and on for the past month....and my little three year old grandson and I have made jokes about grammy's moving hair...as I lift the cap up and down.  We call it "silly hair".  Tonight at supper....I told him I had the silly hair on again....and I moved it up and down.  He laughed at first...and then wanted me to take it off.  He looked at me and very matter of factly said, "Grammy doesn't have hair."  Well, I have a little...but no where near what he was used to seeing.  There was a little nervous laughter at the table...but he and I just kept having our conversation.  I'll show him the regrowing hair from time to time...so that he sees that it will come back.  At three, he doesn't understand much, other than grammy was sick....and the doctors at the hospital took out what made her sick and now she is getting better.  When I've told him this....as he's been in my lap, he takes a very long, serious look at my face...and into my eyes....appearing to try to decide for himself whether I better or not.  But the more we do things together like we used to do....the more he will accept that things are now okay again.

I just hope and pray that they stay that way..okay!!!!  .  Meanwhile, I'm enjoying every moment with that little guy....my son and his wife, husband....that I can. 

Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Survival...Please tell us your latest milestone

Julie, it all sounds great! YIPPEE! The trip you want to take sound beautiful especially this time of year. ENJOY and once more YIPPEE!!

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: Survival...Please tell us your latest milestone

Julie.....some day you will look back and wonder how you managed to make it through this difficult time .   For now life is on the upswing and time for renewal.  Based on the regrowth of hair, eyebrows, lashes you are well on the way.  Enjoy life, as all of us should.
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: Survival...Please tell us your latest milestone

Hi Julie,

How great it is to see you post in the section of the site and I'm with Lainy here on doing her yippeeing too!!!  You sure have been through so much  lately and I so hope that life now will be able to be enjoyed by you with your family!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Survival...Please tell us your latest milestone

I've read frequent responses from some of the above individuals about doing their "yippee dance".  Well, that is one visual of me you don't need - trust me on this.  However, you do get a solid two thumbs-up and a bodacious smile!

Three year olds are a joy (remembering mine - no grand kids in sight).  In things like this they are perfectly honest (just don't ask who took the last cookie).  I think he may understand at a very deep level what is happening and this is way of expressing his love and need for you.

Wishing you many moments of joy with your family!  Treasure them.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Survival...Please tell us your latest milestone

Duke....dang it...now you went and did it...you made me cry.....EXCEPT....for a HUGE change....these are "good" tears.  l babysat my little grandson from the time he was two months old...5 days a week...and about 9 hours a day.  He and I were very close.  The kids had told him I was in the hospital (when I was up at Mayo, or here with blood clots or transfusions) and when we facetimed on the i-pad, he always asked, "Are you at your home?"  When I did come home, he would ask if I was at our home and he always seemed relieved when I would tell him that I was home from the hospital.  For a three year old...he's pretty empathetic....and has patted my back (when he was about 2 years old) when he seemed to recognize that I was sad about something.  My greatest joy was when he started doing his running hugs to me like he used to do.  I think when he did that....he seemed to accept that I was okay again.  I do think my hair loss threw him for a bit though.    As a young 3 year old, you wouldn't normally think of them understanding what is going on...and of course, he doesn't understand it all, but I am quite sure that he is aware of the deep concern over grammy and her illness the past 7+months. 

And yes.....there are times they are frightfully honest...and other times....well, in his case, don't ask him if he has to go to the bathroom....he just doesn't want to stop to take the time. 

I will definitely take the two thumbs-up and bodacious smile.....I believe that is what I gave my local oncologist too.  My yippie dance would embarrass everyone, including me.  I left the oncologist's office with a big smile yesterday.  Last night, my son said that my face looked more relaxed than he's seen it in months...like the worry vanished.  I can't say that is 100% true, but today, I was well aware that I had a new outlook on things...took myself shopping and did some genealogy.....and enjoyed the day.   Knowing that my blood counts were no longer in a dangerous level....and trending upward, I know it affected the way I felt otherwise. 

Thanks Duke.....my family is my everything....and I hope to have many moments of joy for quite a few years.  I'm planning to be on the good side of the percentages.  smile



Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Survival...Please tell us your latest milestone

Hello everyone, I have passed a wonderful milestone in september...nine years passed diagnosis, nine years since I first heard the word "cholangiocarcinoma",  a name that changed my life. All the doctors initially assured me it is very unlikely to be this, it is very rare, ...a fraction of one percent, don't worry. It would have hurt more than helped to worry. I just wanted tests and treatments as fast as they could come. The heck with second opinions, By the time I was on the table, I know at least five doctors looked at the medical tests and time is a major factor. My surgeon was referred to as the best by my gastrointestinal doctor. I chose to put my life in his hands. In my case it payed off. Being told you need half your liver removed is mildly upsetting news, but I felt O.K. lets get this over with. Once again it seemed to work out . My blessings have come ever since. Today I will be fishing with my adult son and enjoying another beautiful fall day. Thank you for helping so many people, Pat

Re: Survival...Please tell us your latest milestone

Dear Pat, YIPPEE! Doesn't get any better than that! You are definitely a Poster "Boy" for CC. No Cancer, a fabulous attitude of now we know the problem, let's get it fixed! Have a great Father and Son Day! Oh and one more thing....YIPPEE!

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: Survival...Please tell us your latest milestone

November sees me 5 years down the line from (a UK) diagnosis and Whipple op - recently picked up a copy of 'The Memories of Allen Oldfather Whipple' - quite a guy.

Just back from a three week US trip to Ocracoke, Williamsburg (lost the Colonies again!), Washington, Lancaster County (Amish) and Shenandoah - memorable. Had a pic with my UK AMMF wristband outside the White House.

Seen a son in law and a  daughter in law arrive plus three grandchildren. Still working, still swimming, still hiking. still hoping for progress for the CC family.

I used to visit the 'Good News' Page regularly during my chemo and post op days hoping I would feature down the line. Here's hoping others are doing the same.

Malcolm

Re: Survival...Please tell us your latest milestone

Hi, Malcom, so good to see your smiling face on here and more than that so great to hear your good report! Five years is nothing to sneeze at! Thank you for checking in with us and glad you had such an amazing trip. Keep up the good work and we look forward to hearing from you again. YIPPEE on your November Anniversary!

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: Survival...Please tell us your latest milestone

Hi Malcolm,

Great to see you on here again and what great news, 5 years, yay!!! Love it!!

Sounds like you had a great trip to the USA and I am sure that Helen will be delighted to see you with your AMMF wristband on outside the White House! And everything seems full on with your life at the moment and that is so good to hear! Busy busy time for you!

Hope to see you over here again and here's to the next 5 years!

My best wishes to you and your family,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Survival...Please tell us your latest milestone

Gavin, my son from another mother, just have to say...what about the PACKERS!!!!!!!!!!! Now, that's what I'm talking about!!! They made little kittens out of the Panthers.

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: Survival...Please tell us your latest milestone

Thanks Lainy and Gavin - great to read your continuing words of support and encouragement on this forum for new and old visitors.

Re: Survival...Please tell us your latest milestone

Malcom.... wonderful news all the way around.  Congratulations on enjoying life and thank you for enhancing this inspiring section of hope and survival with your very own statements.  Counting on your yearly update, forever.
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: Survival...Please tell us your latest milestone

Hello,

Just thought I'd write that it is now three years since my husband's first resection for intrahepatic CC.. The tumour had satellites when first seen on a CT scan for something unrelated. He has had three resections, most recently in July this year. Margins were clear each time. He's currently on adjuvant Xeloda.

Regards,

Genevieve

Re: Survival...Please tell us your latest milestone

Genevieve, great news from across the waters. Your husband is a real warrior and now deserves only good news. I think he also deserves a big YIPPEE! You both obviously have great attitudes and just keep on keeping on! Tell him how happy we are for you both and please keep us updated on his progress. Let's give him one more YIPPEE!

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: Survival...Please tell us your latest milestone

Genevieve.....love this topic.  Thanks for making it grow.
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: Survival...Please tell us your latest milestone

Malcom and Genevieve, Love that good news.  Thanks so much for posting your good news and stories.  Keep coming back....it's very good to for the rest of us to see success stories.  Genevieve, I realize that some might not consider 3 resections a success story...but "I DO" .   My CC was also Intrahepatic and with clean margins...but one satellite tumor and one 5 cm tumor beside it.  My surgeon said that if it comes back in 6 months (or so) she would not reoperate...that it would indicate an especially aggressive tumor...but two years...yes.   Of course, my hope is that it doesn't return, but if it does, I hope that she agrees to operate if it is operable.....or I am lucky enough to find someone else who is as aggressive as your husband's surgeon.   Here's a prayer and all good wishes that your husband and Malcom continue to fight this monster, cc, and win the battle.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Survival...Please tell us your latest milestone

Thanks again Lainy and Marion.

Julie, I agree it takes a different perspective to see three surgeries as a positive, but we do too!

I hope you never have a recurrence, but just some more information - my husband's first recurrence was back in 7 months,  not far from the surgical margin, but fortunately there was no suggestion he couldn't have surgery again so soon. The doctors said that it probably there, but microscopic, at the time of the first surgery, just invisible on intra-operative ultrasound or any pre-op or post-op scans. It had grown quickly - not seen on CT 6 months earlier, over 4cm when resected.  The second recurrence didn't grow nearly as fast.

Prayers and good wishes to you too,

Genevieve