Topic: Time for an Update

It's been a while since I've posted, even though I go in and read the new posts almost daily.  It seems like I'm always too busy to post my own stories.  Since my last post a lot has changed with my husband, Ron.  He was diagnosed with ICC in August of 2013.  After 4 cycles of Gem/Cis, his doctor stopped it due to extreme neuropathy in Ron's feet. New MRI and PET scans indicated that the cancer has not spread beyond the liver.  Great news!

Ron had no treatments for about a month before he started on Xeloda.  He was to take Xeloda twice daily, but only made it through 3 doses and had to stop due to extreme nausea and pain in his abdomen.  At this time his Onc. decided he should see Dr. Kemeny at Memorial Sloan Kettering and sent a referral to her in hopes that Ron could get an HAI pump.  It was taking too long to get an appt. with Dr. Kemeny so his Onc. started him on Cis/Ox a week ago.  In the meantime, Ron was set up with an appt. to see Dr. Kemeny on Feb. 5th.  (Initially they wanted him to come to NYC next week but with the Super Bowl festivities going on in that area, we opted to wait another week.)  In between infusions Ron was getting hydration therapy weekly, which really perked him up.

Ron was feeling quite well for the 4 weeks that he had a break from chemo and before the last infusion of Cis/Ox.  The day of the infusion he didn't feel real well, then the next two days were wonderful.  He said he felt normal again.  I was so elated.  Then the pain and nausea set in on day 3.  Ugh!  He was having a hard time eating anything for the rest of the week.... just didn't have an appetite.  Oxycodone 2x/day was taking care of the pain until last night.  This morning he could hardly get out of bed.  He had pain across his middle section, more in the intestinal region than in the liver/stomach area... but said his stomach and liver regions hurt also.  I had to fight like heck to talk him into going to the dr (as usual!) and he finally relented but decided he needed a bath and shave first.  It took everything he had to get into the tub and then the tears came.  I have only seen Ron cry once before in all the 40 years we've known each other.  It broke my heart into a million pieces.  He took 2 oxycodone and within a half hour we were in the onc.'s office.  He still had silent tears.  The onc. wasn't sure what was going on inside and wanted Ron to go to the ER for a scope, since as an inpatient they would do it right away, vs. waiting a week to get an appt. and results.  Onc said if Ron wanted to he could try hydration first and see if it helped, but if the pain comes back he must go to the ER this weekend.  Ron opted to have hydration, which did indeed help.... tremendously.  I believe he was dehydrated and just rundown from not being able to eat.  He ate a pretty good meal after hydration but no appetite again now. 

Another dose of Cis/Ox is scheduled for next Friday, then we travel to NY to see Dr. Kemeny for a consult only.  We're praying that she will deem him worthy of an HAI pump and we'll be able to return to NY soon after for the surgery.  He just can't seem to tolerate any of the systemic chemo and the Cis/Ox is no exception.  The neuropathy is coming back and it's just too hard on his internal organs.  The Oxaliplatin causes strange reactions to anything cold, which Ron must avoid at all costs.  He drank some water that wasn't quite room temperature and said it felt like someone was sticking a thousand needles in his throat and neck.  Anyone who puts up with all these nasty side-effects must have a strong will to live.  I don't know that I could do it.

I had my only little scare a couple of weeks ago.  My hematologist ordered an ultrasound of my abdominal area, thinking an enlarged spleen might be the cause of an extremely low WBC count (after all other tests were negative).  What showed up shocked us both - 3 solid masses in/on my liver!  An MRI showed that they were only hemangiomas and no follow up is necessary.  I was scared to death, especially since one mass was 6.2 cm wide.  It was a tough 3 weeks from start to finish and now I feel like I never want anymore tests done.  I'm a wimp compared to what Ron is going through.

So... for anyone who tracks what's going on with ICC patients, this is our updated story.  I'll write again to let you all know what Dr. Kemeny decides to do.

Judy

Re: Time for an Update

Wow, Judy and you just couldn't find time to write us? LOL I am so very sorry you both have had such a ride on the CC roller coaster! Keeping everything I have including eyes crossed for that visit with Dr. Kemeny! I will be thinking of you and wishing the best!

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: Time for an Update

Judy....I can only echo Lainy.  What a roller coaster ride you have been on!  I too am crossing everything possible for good news coming your way.
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: Time for an Update

As if dealing with one patient isn't enough! You wanted to join him? sad
I hope Ron is a candidate for the pump, and that the FUDR doesn't prove to be too hard on him. The treatments are easy, as long as the liver can handle the chemo. But you will gave lots of trips back and forth! Dr. K wouldn't relinquish the chemo admin to anyone else. Maybe for you she will.
And I'm happy your health scare went well.

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: Time for an Update

Judy,

It sounds like you and Ron have been through a lot.  Hoping that things will all be going up hill from now on.

Thinking of you.

Love & Hugs,
Darla

"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: Time for an Update

Thanks for your best wishes, everyone.  Kris - Ron's Dr. here in AZ has been trained on how to use the pump, so hopefully, if and when he gets the pump, Dr. Choi will be able to continue all Ron's treatments while we're here in AZ.  However, when we go back north for the summer... that's another story!  Dr. Choi is hoping that he can convince Ron's summer onc to take the necessary training.  According to Dr. Choi, all he had to do was watch a 20 minunte video!  Hmmmmm.  Take care everyone!
Judy

7 (edited by Snowbird Sat, 15 Feb 2014 13:42:31)

Re: Time for an Update

Upon recommendation from Ron's doctor, we flew to NY 2 weeks ago and were given great news from MSKCC.  We met with at least 4 MD's and as many or more other professionals.  New scans were done, along with blood work and it was determined that Ron would be an excellent candidate for the HAI pump.  Surgeon Dr. DeMatteo will be performing the surgery on Feb. 27th, as well as removing the gall bladder, which apparently "gets smoked" from the FUDR anyway, so they remove it as a preventative measure.  New scans revealed more shrinkage of the large tumor and all the small satellite spots have almost disappeared!  This is all after only 4 rounds of Cis/Gem and 1 round of Gem/Ox.  There has been no metastasis to other organs, which is a Godsend.  Dr. DeMatteo even mentioned a strong possibility of future re-section! 
This is a first!  Ron is off chemo again for 4 weeks and then they will give him his first FUDR dose after the pump is up an running.  Ron is feeling great and celebrated his 60th birthday yesterday (My Valentine!).  Doctors initially told him he wouldn't live to see his 60th b'day if he didn't choose to undergo chemo treatments.  We are so blessed that his body is responding so well to the chemo..... or is it the chemo?  He has also been taking cannabis oil since the very beginning and we truly believe this is helping more than the chemo.  I know there are a lot of skeptics on the oil, but it works for Ron.  It also helps tremendously with his nausea and poor appetite.  It doesn't seem possible that satellite tumors would just simply disappear off the scans with as little chemo as Ron has had.  So.... we leave for NY in a couple of weeks.  MSKCC did most of the pre-op work at our last visit, so we'll fly into NY, have surgery the next day, and then Ron will be hospitalized for 4-5 days, come back 2 days later to check incision, etc, then fly back to AZ to recuperate.  2 weeks later we'll return to NY for a checkup.... making sure the pump is operating correctly and then our AZ doctor will take it from there.  Dr. Kemeny initially wanted us to commit to coming back to MSLCC every 2 weeks for pump filling.  She had a hard time agreeing that our AZ doctor was capable of doing this, even though he has done this many times, has worked with a few of her other patients in the past, and says it's not difficult at all.  Dr. Kemeny made a phone call to Dr. Choi to make sure!  Hopefully it will be warmer in NY than the last visit 2 weeks ago!  We nearly froze!!!  $300/night hotel rooms for 9 nights, flight tickets, meals and other expenses will take a big bite out of our retirement funds, but it is all worth it!!!!  Feeling blessed right now :-)
Judy

Re: Time for an Update

Dear Judy, you sure made my day! YIPPEE! All good news and soon more to come. I have read before on our site that Dr. Kemeney is very territorial when it comes to her pump but I rather have that and know for sure it will all be perfect. You will love coming back to AZ for awhile as it is in the 70's-80's. BTW I know that some of our patients have found inexpensive hotels in NYC and I hope they see this and tell you about it. You might try our Search engine and just type in New York Hotels and see what happens. Continued success and thank you for the great update!

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: Time for an Update

This is a great update, Snowbird!!  Best to your husband as he goes forward with the HAI pump.
Willow

Willow

Re: Time for an Update

Judy, you can stay in Rons hospital room with him. It's not too comfortable, but it saw it done. Check to make sure, but that saves lots of $$$
Congratulations! Let me know if you have any questions. I will be happy to answer whatever I can. 267-625-9873.
And, yes, great news that Dr. K will relinquish control! What a relief to you! I'm sure she will make Dr. Choi check in with her?

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: Time for an Update

Ron had the HAI pump "installed" by Dr. DeMatteo at MSKCC on Feb. 27th as well as having his gall bladder removed, a liver biopsy and 13 nodes removed.  The surgery went well and they kept him in the hospital for 7 days, actually more like 6 days since they didn't start surgery until after 5pm.  We were originally told that it would be a 4 or 5 day hospital stay, then come back 2 days later to have staples removed but that didn't happen.  We already had plane reservations to fly back to AZ the evening of the 7th day.  That was a mistake..... the 5 hour flight was terribly uncomfortable for my poor husband.  Then we had to return a week later for a follow-up with the surgeon, staples removed and Ron's first pump injection of FUDR.  One of the lymph nodes proved to be cancerous.  Dr. DeM wasn't concerned at all about this.... it was the node closest to the liver and no other nodes were affected.  However, Dr. Kemeny says that a recent trial indicates that in addition to the FUDR, systemic chemo is necessary.  Since Ron cannot tolerate Cisplatin because of neuropathy, they will give him Gem on his off weeks from the FUDR.  We finally witnessed what others have said on this site about Dr. Kemeny's attitude and behavior.  Wow!  Never in my life have I ever been treated so horribly by a professional!  Dr. K's ended up apologizing to us, but it wasn't really sincere.  Her nurse came in before we left and told us how bad she felt about how we had been treated! I seriously want to file a complaint with the hospital but I think I will have to wait until she is no longer Ron's oncologist.  Sad!  My sister suggested that at our next visit... have my recorder ready on my smartphone.  I'm going to do this.  Anyway.... back to Ron.... he continues to lose weight (45 lbs in 7.5 months) due to poor appetite and nausea.  We really need to find something new to curb the nausea.  I've read some suggestions on this site and we will discuss with our AZ oncologist next week.  Ron went for 6 weeks without any treatment and Dr. K. says that the tumor grew in that time, which didn't surprise us.  The pump was really the best option I believe and we so pray that his body can tolerate the FUDR.  Today is the 4th day after FUDR.  Day 1 and 2 were fine.... he was just a little fatigued, but then he is still recovering from a major surgery too.  Day 3 wasn't so good... nausea and poor appetite again.  Today he slept almost the entire day and was super-fatigued.  No nausea, but poor appetite.  I've read on this site that day 3-5 are the worst.  Next week our oncologist in AZ will empty the pump.  Dr. K. (against her wishes) will not see Ron again for 2 months but will consult with Dr. Choi here in AZ.  It is just too hard on Ron to have to fly back and forth to NY every 4 weeks.  We plan on heading back to ND in mid-May and not sure what will happen then.... we may be forced to go to NY every month during the summer.  Does anyone know of any oncologists that have worked with the HAI pump in the ND or MN area?  I've heard that they work with the pump at the U of MN, but it is a different brand of pump.  If anyone has any suggestions, I'd love to hear from you.  This website has been such a great source of information.  I am so appreciative of all the people who post and especially the moderators!  You are awesome!!!  It must take a lot of your time, moderators, to keep up on everyone's posts.  Please know that you are much appreciated!  Thank you to all!
Judy

Re: Time for an Update

Judy...Medtronic produces the HAI pump.  You might want to inquire whether there is an institution closer to you either part of the Sloan trial or independent of Sloan.  Also I remember that Krisooj had mentioned Duke as well. 
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: Time for an Update

Hi Judy,
I don't know who to contact, but if U of MN has used a similar pump, they are generally the same. They should be able to "adapt"! Yes, Dr. K does not like relinquishing control. Her staff is great, tho! You can discuss most everything with them. I hope this is the answer for Ron, and that the tumor starts shrinking!
I was given Gem/Ox with the FUDR. I realize with neuropathy, Oxaliplatin is not an option, either. I hope Gem alone helps. The FUDR should batter the tumor. Mine shrank very well on it, for the few rounds I could get. Don't take my experience as gospel, tho, as I was not able to tolerate any chemos for very long.
In closing... I am sorry you had a similar "lovely" experience with Dr. K. She really is quite good at her job, just not the "dealing with people" part! It's unfortunate...

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: Time for an Update

Dear Judy, first of all a big YIPPEE on Ron's having the surgery. Unfortunately the healing after the surgery is not always easy. Since you already read up on the suggestions here for not eating the only thing that comes to my mind is making a visit to a Dietician. As for Dr. K. you may want to keep a log on what has transpired to the best of your memory. I am sending best wishes for a better recovery as I feel given a couple of weeks as Ron feels stronger his appetite may return. Sending a ton of hugs.

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: Time for an Update

Judy,

I too am sorry to hear of your bad experience with Dr. K  With everything you are dealing with, this is not something you need to add to it.  Apparently she is  very good at what she does,  but does not have good people skills.  Hope you are able to work things out to find a way for Ron to be treated without so much travel involved.

Love & Hugs,
Darla

"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: Time for an Update

I hate that you were treated poorly by your doctor, shame on her! I am happy to read that surgery was successful and will be praying for healing and recovery.
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: Time for an Update

Update:  Ron's Dr. in AZ emptied the HAI pump last week and all went well.  10 ml. of FUDR was removed, as expected, and 30 ml. of saline/heparin mix filled the pump again.  Ron is now 4.5 weeks post-surgery and recovering well.  He is slowly starting to gain back some of the 15 lbs. he lost after surgery and the nausea is under control, thanks to new meds.  Next week Ron will start with systemic chemo (Gem) in addition to the FUDR.  He still suffers from abdominal pain and neuropathy, but this is tolerable or helped with meds.  The FUDR was hard on Ron but hopefully the side effects will lessen with each treatment.  I know this is wishful thinking, but one must stay positive.  I'm amazed when I see all of the reported numbers for the CA19-9 test.  The lowest result Ron has ever had was 4500+.  Last test was over 10,000!  This was after 6 weeks of no chemo treatments and the last scan had showed the large tumor had grown all the way back to the original size of 10.8 cm.  Previous scans indicated the chemo had knocked it down to 7.3 cm.  Apparently this is a very fast growing cancer!  It is so frustrating to look back and think that 4 months of chemo and suffering was all a waste and we're back to square one.  We're marching on again and praying that the new chemo regimen is knocking the %^&@# out of this stuff!  I think that I probably "talk" in circles.... hopefully some of you can understand what I'm trying to say. ;-)

Re: Time for an Update

Judy.....let's  cross our fingers that the tumor and the CA 19-9 will reduce as quickly as it reappeared.  The weight gain is fantastic and yes, 4 months of chemo with negative results always is tough to digest.  But, as you said, on and upward. Hoping and wishing that Ron continues to recover, gain weight and that the chemo treatments will reward him (and you) with excellent results.
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: Time for an Update

Dear Judy, we so understand as this is not a smooth road we've all hit the bumps at times. None of it is a waste of time as sometimes one takes a little more hunting and pecking. Then some connect right away with the best combo for them. Please keep in mind that you can always get a 2nd opinion!
I wish for the chemo to magically kick in and that the next update will have more and better news.

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.