Topic: Decrease in CA 19-9

Hi all,

maybe it is a little early to post good news however feel it is important for us all to see some good news.

Dad had his CA 19-9 test today and it dropped from 193 to 85 from one cycle of GEM/CIS and panitumumab. I hope this is a good sign for his scan on the 23rd of May.

Something else I wish to report - his platlet count came back as 337! very strange as his previous counts (even dating years back) have always been around 140-160 mark. Last week I did give him 4 days of the papaya extract...... anyway I dont know what is related to what however thought worth reporting if others have problems keep platelets up.

He still has a rash (a little better but may get worse as we just had our second dose of Panitumumab), he complains of difficulty urinating (however luckily renal function and urine test ok so they have suggest ural)

I hope this is useful for others as well.

I am very grateful to everyone on this site for the support!

Re: Decrease in CA 19-9

Hi Rain,

Nope, it is never too early for you to post some good news about your dad! Thanks for this and for letting us know about the drop in CA 19-9, fingers crossed it continues dropping and also for great results from his CT. And for sure what you said will be of use to others so thanks as well for that.

My best wishes to you and your dad,

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: Decrease in CA 19-9

That's great Rain, please keep us in the loop.

Re: Decrease in CA 19-9

Rain....great news. 
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: Decrease in CA 19-9

Hi Rain,

I am so happy for you and your family....looking forward to more good news

Take Care
Ilias

Re: Decrease in CA 19-9

thanks so much everyone.
Ilias I hope your mother is feeling well
All my best

Re: Decrease in CA 19-9

That is great news!! Keep us updated! When is the next scan?

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Decrease in CA 19-9

Fantastic news. Thank you for sharing.
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

9 (edited by Rain Fri, 24 May 2013 21:07:23)

Re: Decrease in CA 19-9

Quick update on Dad.

His CA 19-9 went down to 51 after two cycles of chemotherapy.
He had his CT scan on Thursday and we get the results on Monday afternoon - please wish us luck.

I am going back to my two young kids in Italy on Wednesday and would hate to leave if we get negative news......


Al the best

Re: Decrease in CA 19-9

Good luck with the scan results Rain.  I hope they are as positive as the CA 19-9 level!!!

Mary

Re: Decrease in CA 19-9

Good to hear Rain that your dad's CA 19-9 levels are dropping and my fingers are crossed for the best possible scan results on Monday. Loads of positive thoughts coming your way and please let us know how he gets on.

My best wishes to you and your dad,

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: Decrease in CA 19-9

Rain....based on the lowered tumor markers, I expect good news coming your way and for you to enjoy and safe trip to Italy.  The little ones will be thrilled to have their Mommy back. 
Please, keep us posted.
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: Decrease in CA 19-9

God Bless Rain.

please pray for mum...not well...ca19-9 jumped significantly...we had to wheel her by wheel chair to see onc today...feel so much for her.

have safe trip...i hope only the best for your father

Lou

Re: Decrease in CA 19-9

Ilias.....my heart is with you.  Tons of love and good wishes is heading your way.  Please stay in touch.
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: Decrease in CA 19-9

I'm sorry to hear about your mum Ilias. I hope that her onc can get to the bottom of what caused your mums CA to jump so quickly. Please remember that we are here with you and loads of positive thoughts are coming your way. And pleas let us know how your mum gets on.

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.

16 (edited by Rain Sun, 02 Jun 2013 06:20:15)

Re: Decrease in CA 19-9

Hi all,

Am so sorry have taken a while to post  Dad's results. Have felt so terrible for what Pam and her family are going through that didn't fell like postings.

Dad original scans showed some non specific soft tissue along the hepatic artery. Also he has some lymph node disease. His recent scan conclusion states; sites of soft tissue abnormality remain relatively unchanged . However the report also states that some of the lymph nodes show cystic necrosis which our Onc thought is tissue death possibly due to chemotherapy.

I know this is good news however must admit was hoping for some shrinkage (even though maybe 6 weeks is a little early????)


My only concern now is dad's mental state: he is becoming more and more down as he realizes this is not like other cancers where there is a set number of cycles.

I think he wishes to return to his home town in Italy in August and now I am wondering if in August we should organize a chemotherapy break (the trial allows a 5 week break) so he can have a visit with his family whilst he feels well.

Naturally I am scared of having a chemotherapy break but if he wishes to do it ( his mind changes daily so hard to tell) I will try and organize it.


All advice regarding chemotherapy breaks?

Re: Decrease in CA 19-9

Hi Teresa,

Thanks so much for the update on your dad, and no apologies are needed from you at all.

I have a few thoughts on your dads chemo and taking a break, but they are only my thoughts and as my dad never had chemo I can't share any personal experiences. I hear what you say about being scared of your dad taking a break from the chemo, I guess that is understandable. You say that the trial your dad is on allows a 5 week break so I'm guessing that taking a break will be okay. And considering what you say about your dad's mental state right now, perhaps a break from the chemo so that he can have the visit with his family will do him a lot of good and wonders for his mental state?

He changes his mind daily as you say, understandable again. Is he looking to you for advice or guidance on this decision? My dad looked to me a lot for help with making his decisions about stuff and I always used to say to him that I would support him in whatever decisions he decided that he wanted to make. And I used to say to him as well that he should do what ever he felt was best for him and him alone. I know that none of this is easy Teresa, but we can only do our best for our loved ones can't we and you are certainly doing everything you can for your dad.

How about speaking with the onc or whoever is running the trial and see what they suggest about taking a break and how your dad would get a big boost from spending time with his family? As I said, these are just a few of my thoughts here and hopefully others will chime in soon with their thoughts as well.

Please let us know how things go here and what your dad decides to do as well.

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: Decrease in CA 19-9

Rain...I am hoping for others to chime in also however; personally I believe that a trip to Italy would be a welcome reprieve for your Dad.
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: Decrease in CA 19-9

Hello Rain,

I can't help with the chemo break, although it sounds like a holiday to visit family would be lovely for your Dad, if he decides he wants to do it and you get the oncologist's okay. Re his mood though, the recurrence and ongoing chemo must be so hard for him. Did you know that Medicare Better Access here covers up to 10 sessions with a psychologist/clinical psychologist, with a GP referral? The right person might be some help.

Best wishes,

Genevieve

Re: Decrease in CA 19-9

Genevieve...the information re: Medicare is really important to know for others living in your country.  Would you mind reposting it in the Insurance section of our site?
Thanks so much,
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: Decrease in CA 19-9

Hi Marion,

Just posted it there now.

Genevieve

22 (edited by Rain Wed, 19 Jun 2013 14:02:39)

Re: Decrease in CA 19-9

Hi friends,

Just a quick post to give our board some good news.

Dad has his port put in on Tuesday and after three cycles of Chemotherapy his CA 19-9 came back as 32 (normal under 38).

I know this is good news and and for this I am grateful

I am so grateful for this board,

Teresa

Re: Decrease in CA 19-9

Teresa,

That is indeed good news and worth celebrating!  Thank you for sharing.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Decrease in CA 19-9

Dear Teresa, nothing like finishing off a day with some very good news, indeed. Tell Dad that I said it was about time he learned which way the numbers go!!!

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: Decrease in CA 19-9

Theresa....fantastic news.  Congratulations.
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