April 2, 2014 at 1:30 am #79012
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.April 2, 2014 at 1:12 am #79011marionsModerator
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.
MarionApril 2, 2014 at 12:17 am #79010
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.March 17, 2014 at 5:16 pm #79009lisacraineParticipant
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.
LisaMarch 17, 2014 at 5:00 pm #79008darlaParticipant
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,
DarlaMarch 17, 2014 at 3:22 pm #79007
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.March 17, 2014 at 3:16 pm #79006kris00jParticipant
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…March 17, 2014 at 2:16 pm #79005marionsModerator
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.
MarionMarch 17, 2014 at 3:53 am #79004
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!
JudyFebruary 15, 2014 at 11:38 pm #79003kris00jParticipant
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?February 15, 2014 at 9:51 pm #79002willowParticipant
This is a great update, Snowbird!! Best to your husband as he goes forward with the HAI pump.
WillowFebruary 15, 2014 at 8:18 pm #79001
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!February 15, 2014 at 7:41 pm #79000
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
JudyJanuary 29, 2014 at 9:46 pm #78999
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!
JudyJanuary 26, 2014 at 10:12 pm #78998darlaParticipant
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,
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