4th treatment cancelled-very sad...

Posted By
Sharon93065
8/10/2017 8:06pm
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Replies: 13

y blood panel came back.  My liver nunmbers so  high that as i was reading them my oncologists called me.

Put me on Predisone starting at 5pm today. Pharmacists said i will be up all night.  That will be ok if i had any enery.  Then 5 at noon tomorrow, and 5 Sat morning.

I am so said that i did not make it to my 4th treatment of Opdivo/Yervoy.  I also will have lab work every day watching my liver numbers.  He asked how i have been feeling.  Oddly enough i feel fine except extremely tired.  No nausea, diarrhea, fever etc.  (Please Lord and do not let it start.)  I  have read on this forum that the Immunotherapy can keep working in me even without getting the 4th treatment.  And i can still get maintenance.  Dr said let's get liver numbers down then we can look at our options for further treatment.

Last January before i knew i was sick 8 of us ladies booked a 8 day Viking River Cruise Paris to Normandy. 

I didn't get the insurance because it was costly and you didn't get  your money back on this one just a credit.  Should have gotten outside insurance but too buy at the time.

Anyways the timing today is good because in 2 more days i would have lost 35% and not I'm only losing 15%.

Total cost of trip was only $2599 including air.  Oh well, my health is more important.  I cried when i heard my 4th treatment was canceled.  Thank you all for your support and important info i have gained thru this forum.  

By the way i did test positve and can get the Targeted Therapy.

Sharon from Simi Valley CA

Kaiser Woodland Hills, Dr Wang Oncologist. 

orry for typos and mis-spelling...

ow did i make a lot of errors, obviously that was sad about missing 4th treatment.  That was my ultimate goal.

Hi Sharon,

Glad you are feeling no worse than you are and I hope your liver function returns to normal quickly.  However, here is some data that may make you feel a bit better about missing that last combo treatment:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html  

The main point of that report is this:  "Similar 18-month OS rates were observed in pts who discontinued NIVO+IPI due to toxicity and in the overall treatment group."  

Additionally, most folks with side effects to the combo...once those are under control....can go on to tolerate the nivo alone portion of the treatment very well...should they desire to do so.  Hang in there.  celeste

I clicked and read those articles.  Fortanately this forum i have read other case histories of  others going thru this that have had the same result.  Now i won't have to wait so long for my next scan anyways?  Pharmacist sayd the Presdnisone would keep me up all night, plus the new disappointment.  I slept fine.  Off in a hour to get new labs. 

Anonymous - (8/10/2017 - 9:32pm)

I am sorry for what you are going through.    This disease seems to get its ugly tentacles into every part of our lives.  

My hope is the treatment does what it is it is supposed to and there are many more great vacations for you in the future!

keep on fighting!     

 

 

I know it feels like a bummer having to skip the last of the combo doses, but as Celeste pointed out, many people have had good response without finishing all 4 combos. You'll have to wait for your liver numbers to go down in the normal range before starting Opdivo maintanence.. I had to skip my first scheduled maintanence dose of Opdivo because of my liver numbers and fever at the time. Waited for my body to settle and get back to normal and then started Opdivo. It's been a smoother ride without Yervoy involved. Sorry you had to cancel your trip too, hopefully you'll get through all this melanoma madness and be able to take a fun trip when you're feeling well. 

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

How long did you have to wair?

A couple of weeks or so. I never took any steroids, so it may go back to normal quicker with the Prednisone

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

I'm so sorry, Sharon.  I know that is a disappointment.  And I'm sorry you have to cancel your trip.  Did you pay your deposit with a credit card?  Sometimes the card has a benefit covering your travel purchases.  You might want to call them.

 

Strength and Courage,

Susan

Thank you i will, i knew that applied to some cards I will see. Actually the cards all fell into place, if i had gotten those test results Monday I would have lost a signficante amount more.  Since i have my roommte another lady to travel with and take my place, they can make the change tomrrow and i just lose 15% What a difference a day  makes.

 

Hi Sharon,

I just wanted to write to tell you I was in the same boat as you 2 1/2 years ago. I received three out of the four combination treatments. I was devastated. However, my first set of scans showed 95% tumor reduction and six months later I was cancer free. I've been NED since November 2015. 

Best wishes!

Ashley

Thank you Ashley, you ladies have been an amazing support for me. Dr. put me on 5 prednisone bills for 5 days, 4 for 5 days weaning down to 1/2 for 5 days then i see hime again.  With blood tests by weekly for liver. He increase my thryoid to 50 mg, should have been that way all along.  Fatigues is terrible.  Didn't sleep last 4 nights due to worry (liver). Last blood test did show big improvement, still much too high.  I'm feeling fortunate tho to have had the 43 treatments and reading all of your good reports.  I will get a new petscan now to see how tumors have shrank.  The tumor on my back was gone the day after 2nd treatment.  I do have lung mass, lymph nodes so again feeling hopeful.  The good part is no rashes while on prednisone.  I've been reading your posts that hopefully I will get Opdivo alone and the rashes will come back.  This time i will use the 12 hr Allegra instead of the 24 because i don't think that's so good for your ilver.  Anything 24 hr stays in liver longer.  Told me to stop the cholesterol meds. Other meds, although my xanax might have been nice ha!  I have hot milk with chamolie tea ready for me tonight.  And i think I'll drink a calm (magnesium.)  With my insomnia the last 3 ngihts I have google what to eat for liver disease. Dr didn't tell me to reduce sodium.  Went to store this am and what a wake up call, how salt and water injected in chicken etc.  I have very good reducing sodium and eating what is recommended for liver disease.  But only because I google it.  I think i should have been told??? Fortunately i can have caffeine yeah!! because i really  need that boost I am so tired.  And my afternoon green tea.  Will go tomorrow am for next blood test and feeling more positve about the results.  Again, thank you for your advise I need it.  I copy and paste and send these positive messages to my 49 year old daughter.  It helps her as well. God Bless you all.  Sharon 

Liver numbers continuing to improve.

Below 54 is normal for ALT 
July 03   July 20   Aug 10                  Aug 14    Aug 17
33           95           1147 WOW!!      512           284 goodie
Below is30 is normal for AST
22           45           813 yeeks!          133            75 yeah!

I get retested Monday.
Almost 5 straight nights without sleep. It's a Xanax night.
I just read that a teaspoon of honey helps you sleep in  you have a liver condition.  Will try that tomorrow night.