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(9 replies, posted in General Discussion)

Thank you all for reaching out to me!  It means so much to know that I can always turn here for support and love smile

Lainy - I guess his colitis is a bacterial kind.  The antibiotics are working as he hasn't had any pain in about a week.  The antibiotics make him so nauseous that he can't get any food down.  Are there any other ways to prevent colitis flare ups?! Tomorrow they are doing a MRI to see if a tumor is causing some sort of blockage of his colon which would result to the bacterial colitis.  His intervential radiologist wanted an endoscopy to determine this, so I'm not sure why his oncologist ordered a MRI.  Very frustating.  His radiologist does not think this is the case.  We need the colitis to clear up so he can continue treatment and get SIRT.  My aunt is up here and has been helping out which is a huge relief.  She is taking him to his MRI tomorrow which I am so thankful for, especially now that I am coming down with something which I hope is just a cold! 

Kathy - thank you for your dear words.  I think the hardest part about being the caretaker is that we forget to take care of ourselves.  It is very hard to go through the motions of normal everyday life when someone you love is so sick.  Your family sounds like an amazing bunch!

Caroline - your mom's story is so similar to my dad's.  This is his first round with colitis, but he has missed two treatments because of it.  He says the colitis symptoms are worse the the cancer symptoms.  Go figure.  I guess colitis CAN be that bad.  I have been so nervous asking myself, can he really be in THIS much pain from colitis?  Is your mom going back on the trial medication even if it's not working?  What are her next steps?  I pretty much have my dad convinced to transfer to Dr. Zhu.  I looked up that clinical trial he mentioned to you, Nivolumab.  I'm not sure if you've done much research on it, but it's considered a break through drug by the FDA because of it's huge success with melanoma.  It sounds very promising - let's just hope it has the same results for CC!  It's definately not off the table for us. 

Clare - I agree.  Nothing is easy.  Not a single part of it.  Sometimes I have to muster up energy just to call his oncologist.  The lonely part is the hardest.  It's not a lonely as you don't have anyone to talk to - it's a lonely in that no one understands the medical details like you do, so you don't have anyone to lean on for advice.  My dad doesn't even know what I know about the disease and the treatment options/clinical trials, so I am left all alone to make these difficult decisions for him.  It's not an easy place to be and it's a huge weight on my shoulders especially at only 33 years old.  I have to stay strong - it's the only option!

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(15 replies, posted in Good News / What's Working)

This is wonderful news!

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(9 replies, posted in General Discussion)

Hello,

I've been having a very tough time lately.  I do not have anyone in my life that I can talk to about the roller coaster ride of this disease, so here I am venting and looking for support!  I spend every moment of free time I have researching my dad's symptoms and options.  Over the course of the last few months, I have been pushing my dad to change Doctors (to Dr. Zhu at MGH).  He complains all of the time about the treatment he's currently receiving at Dana Farber, but he won't do anything about it.  There is only so much I can do myself.  He doesn't take much control of his situation (if any), which is very burdensome on me.  I know it's not fair to me, but I don't know what else to do.  I spend little time focusing on my own life and my own happiness and it's really starting to have a major effect on my well being. 

We were so happy after his CT scan mid-Feb which showed a large reduction in the disease in his liver.  We even got the okay to hold off on SIRT because he was moving in the right direction.  A few days after the scan and last treatment, my dad started to get high fevers and lower abdominal pain, so he decided to skip a treatment.  The pain got worse, but he didn't go into the hospital in hopes that it would just clear up on it's own.  He went into Dana Farber two weeks later and had to skip another treatment because the pain was so bad.  They did a CT scan to find the issue which happened to be colitis.  He was immediately placed on antibiotics and is actually feeling much better.  That is the good news.  The bad news is that he has had aggresive disease progression.  There is also a renal lesion that was always referred to as a cyst that has increased in size.  There is also growth in some lymph nodes (which could just be due to the colitis, but could also be because of disease).  They noted free fluid in the pelvis area and early portal hypertension.  All of these things are not good.  The problem is that we do not know if some of these things are due to colitis and/or from missing a treatment or if the treatment itself is just not working any longer.  I just wish he had gone into the hospital earlier instead of waiting around for the colitis to get out of control.  Then he might have only had to miss one treatment and not two. 

I left a few message for the radiologist about scheduling an appointment for SIRT.  I don't even know if it's still on the table at this point.  My dad has an appointment at Dana Farber today to discuss his options.  I can't be there, nor am I really up for it anyway.  It just blows my mind that you can be doing so good one day and the next it's like everything is going wrong and is out of control.  His surgery back in March of last year was so successful.  It was a miracle at that point and we truly believed that he was on his way into remission.  I feel so cheated.  There's really no other way of putting it.  I'm praying like crazy and looking for all options.  I even reached out to NIH about the clinical trial of TIL.  Just feel sad, lost, alone and scared, but trying to push through and know that there are a lot of ups and downs.

So here is the great news about the cost!

"No need to worry about any co-pays @ this time…  we’ll accept whatever insurance pays…

In exchange for the physicians’s feedback – we are waiving any insurance deductibles or con-insurances at this time."

I will fill you in on the details of the test results.  The kit was sent to my dad's oncologist for Monday arrival.  Hope to have the blood drawn on Thursday when he goes in for treatment.  This is very exciting!

Hi Caroline,

I'm positive that you will find another treatment that works well for your mom.  I know how disapointing it can be when you try something that doesn't work.  This happened to my dad when he did adjuvent gem after his surgery.  He went through all of those treatments just to find out his cancer returned aggressively to his liver.  He changed treatments to FOLFOX, had an allergic reaction to ox, then continued with just 5-FU.  To everyone's surprise, the 5-FU gave him a 44% overall reduction in his tumor burden.  You just never know.  I'm really excited to hear more about Dr. Zhu's new trial.  He is a wonderful Doctor and we are still highly considering going under his care.  He does not give up and thinks outside the box.  If you want to email me privately, my email address is Nikki4470@aol.com.  Stay positive and focused!  Sending prayers and good intentions your way.

Nikki

Jason,

Thank you for this post.  I actually contacted Guardant Health and they responsed within the hour.  They are reaching out to my dad's oncologist and will send her the information she needs to submit the blood draw.  I'm not sure what the cost is and if it's covered by insurance, but I will let you know. 

Nikki

Willow - I wonder how much risk there is in spreading the cancer when doing a liver biopsy.  When we got a second opinion from the wonderful Dr. Zhu at MGH, he said that it's not a huge deal to get one done if it's going to make us sleep better at night.  I guess I will have to ask about the chance of spread with the biopsy.  If high, maybe we will choose not to have it done.  Every Doctor has said, it looks and acts like a reoccurence of CC, but we will never know for sure what it is unless it is biopsied. 

Rosetta - I know in some cases it won't be elevated at all, but it was elevated during initial diagnosis and is now just flat with the reoccurence.  Very strange.

Caroline - that's great about the CA-19 reading.  It sounds like your mom has similar trends in CA-19 and CEA as my dad.  I know CEA can be elevated when there is reoccurence in the liver, but it's mainly a reading they use for cancers other than CC.  I wish there were more answers!

YAY!  I love this!

Just a little update...I spoke to my dad's radiologist, Dr. Schenker earlier this week and he feels comfortable delaying SIRT until there is a need for it.  He said that he presented my dad's case to the tumor board and the board is shocked at the percentage of overall shrinkage (I did the math and the large tumor shrunk 67%!).  They said this is very uncommon with 5-FU as a single agent.  We are going to scan every two months instead of three and Dr. Schenker said that if/when we see stable disease, we will then move forward with SIRT. 

Although multiple Doctors have told us that this is definately CC that has spread to the liver, I still have my doubts.  I just find it strange that his CEA is elevated (but CA-19) is normal and 5-FU alone is having such a huge impact.  Both of these factors are very common with primary liver cancer and colon cancer that has spread to the liver.  Although I don't want to put my dad through another procedure, I'm wondering if it makes any sense for him to have a biopsy.  It is was in fact liver or colon cancer, this would/could change the course of his treatment.  Just trying to think outside the box!

Thank you all for your kind words, positive vibes and prayers! One of our biggest challenges is learning that you can live with cancer, that life can and does go on.  Every day there are new miracles and I truly believe my dad is already one of them. There is always hope.  When you get pushed down, you get right back up again. This week was school vacation and my dad had my two youngest brothers all week long and he managed not only to do something with them every day, but he took himself to his own CT scan on Tuesday and to infusion on Thursday.  Then we all went back into Boston to the children's museum yesterday for the entire day all while he was wearing his infusion pump. Talk about a strong man that won't let his disease control his life. He amazes me every single day. I questioned his decision to give up Oxaliplatin, because we were told that the combination was going to give him the best results, but he stuck to his gut and said it was more important for his well being to be able to spend time with his children, so he opted for the 5FU alone.  Sure enough, another example of how you must listen to your gut as it's your angels that give you those gut feelings.  His oncologist is shocked and said that another cycle of 5FU alone might possibly bring his disease under control making SIRT at this time not even necessary. I am a happy girl this week!

Hello,

My dad went in to Dana Farber today and got the results of his CT scan that he had earlier this week.  He has had 44% overall shrinkage since starting 5FU in December (when he found out he had recurrence in his liver). 

We met with Dr. Schrenker at MGH on 2/13 and will be scheduling a "mapping" appointment for SIRT (radioembolization, Sirtex, y-90).  If he is a candidate, the procedure will take place two weeks after the mapping. 

He has been feeling great, has been gaining weight and has had normal liver functions, but we will still shocked at the significant amount of shrinkage since he was only on 5FU when they wanted him to continue with FOLFOX (even though he is allergic to Oxaliplatin). 

We continue to pray to shrink the tumors as much as possible with chemo and then blast them out completely with SIRT.  We are happy today.

Nikki

Hi Caroline,

The plan is to go ahead with the consultantation/mapping and then the actual procedure two weeks later.   This is all dependent on whether or not we receive the out of state approval from his insurance company.  The company, Sirtex (http://www.sirtex.com/us/), has representatives that help you with the insurance approval and they said that if we can't get the approval, then they do have Doctors in Massachusetts that they highly recommend.  So, if it doesn't work out with Dr. Moeslein, then hopefully he can continue with the treatment here in Massachusetts with another Doctor.  We really want to see Dr. Moeslein though because we trust him immensely.  Yes, they recommend Xeloda in conjuction with radioemobolization. 

If you ever want to talk to people that have had Sirtex, you can visit http://beatlivertumors.org/SIRT_Info.html and reach out to Suzanne Lindley.  She has an amazing story and has put me in touch with other amazing people that have survivor stories because of their experience with Sirtex.  Lisa Craine (from this board) was kind enough to put me in touch with Suzanne (and for that I thank her up and down)!   

I completely know where you are coming from in terms of second guessing your decisions and trying your best to make the right ones.  A lot of things I also learned in highsight, but I have to keep telling myself that we can't look back only forward.  My biggest advice is go with your gut and as my dad says, listen to your body. 

Nikki

Hi Caroline,

Thank you for the update.  We still have this on the back burner, but haven't forgot about it.  I am very intrigued to hear how your mom progesses.  I have read very good reports about this drug, but there isn't too much data on how it works with CC, so I am excited to hear how your mom does. Dr. Zhu is amazing.  My dad is continuing on F5U and is now in the process of obtaining out of state approval for SIRT (Y-90, radioembolization, Sirtex, Sirspheres) at the University of MD.  I wonder if he can participate on this trial after the treatment (although they do reccomend F5U in conjunction with SIRT)? I will have to ask. I am happy to hear it is a pill and that your mom is handling it well!

For everyone's reference, this is also referred to as XL184.

Nikki

Hi Lisa,

My dad has the F5U pump and he actually has a velcro band that straps around his stomach with a slot where the pump slides in.  Dana Farber gave it to him.  With his shirt over it, you could never tell he was wearing it.  Just a thought!

Nikki

Hi Caroline,

I'm glad I found your post, as my dad just recently had a second opinion at MGH with Dr. Zhu.  I have also heard very good things about Dr. Hong.  He reccomended what Dana Farber had reccomended which is FOLFOX.  There is one catch though, my dad had an allergic reaction to one of the drugs in it (oxaliplatin), so he has to decide whether or not he wants to endure the 6 hour infusion going forward.  They have to slow drip the oxaliplatin once you have a reaction to it.  I'm not sure what the plan is if we do not go down that road.  He is really just hating everything about chemo (as one should), so I'm not sure how much longer he will continue with infusion.  The pills may be a better option for him. 

I am interested to hear how the trial goes for your mom.  We are in the process of figuring out whether to proceed with radioembolization.  Given the fact that my dad is really upset about chemo, this may be a good alternative. 

It is tough when you have to go out of state for treatment.  I stayed in a hotel in NY during my dad's surgery for over 2 weeks.  It was very expensive.  I am glad that you found an organization that will help you with expenses.  I can walk to MGH from my office in 10 minutes, so I do count my blessings in that manner.

It sounds like you are just like me in terms of the reseach end of it.  I spend countless hours gaining as much information as I can to give my dad the best options available. 

Wishing you nothing but positive results!

Nikki

I wanted to share our progress so far and a little bit of good news.  My dad received his first round of FOLFOX on December 12th.  During his second treatment on December 27th, he had an allergic reaction to the Ox and had to discontinue treatment after only 20 minutes.  We had to be transferred to Brigham and Womens Hospital, so that they could monitor him for the next 4 hours before sending him home.  He went home with two days worth of steroids and amazingly, these took away all of the lower abdomen pain he had been experiencing since he was diagnosed.  It is my thought that these somehow reduced the inflammation he was having which I related back to his records stating that he has mild diverticulitus and colitis.  On the 8th, we went for a second opinion at MGH and met with Dr. Zhu who was the most compassionate, intelligent and patient Doctor we have met with thus far.  He did state that the treatment of FOLFOX was the right move, but he also said that he has a lot of "tricks up his sleeve" for treatments.  He heads up many clinical trials and does a lot of research specific to CC.  He did say my dad is just one of the unlucky ones that not only had it come back so quickly, but also aggresively. 

Because of his allergic reaction to Ox, he now has to be tested for the true allergy.  Then we have to decide whether or not he wants to be de-sensitized.  This means either a very long day in infusion or even inpatient infusion (depending on if we continue at Dana Farber or switch to MGH). 

My dad is having infusion as I type this, but it is only F-5U. 

I wanted to start this paragraph off by saying THANK YOU to Percy.  A few weeks ago, I sent my dad's CT scans to Dr. Moeslein from the University of Maryland.  He just called me a few minutes ago and said that my dad is a great candidate for radioembolization.  This had not been offered to us at Dana Farber.  I asked Dr. Moeslein why and he said because a lot of hospitals do not want to take the risk because they do not have a lot of experience with this procedure.  Dr. Moeslein said that this isn't a short term (say 6 month) fix, but that it has the ability (with good response) to produce long term results.  He has one patient that was in a situation worse off than my dad that is 5 years out because of this procedure. 

I have yet to share this news with my dad, but hopefully once he talks to Dr. Moeslein (who gave me his cell phone number and said call anytime!) he will be excited about this opportunity. 

I know I say it all the time, but I can't stress how important this board is to us and how grateful I am that it has connected me with some of the most amazing people that have let me into their lives and shared their stories with me.

Thanks Lainy!  I will continue to seek out second, third and fourth opinions - i think I am on the right track.  I have been told a lot lately to take care of myself...I am trying!  I started this weekend by getting my nails done for the first time in a long time.  I promise to enjoy the holidays, so I can recharge my batteries!  Wishing you nothing but health and happiness in the coming new year.  Thanks for always being the first one to respond smile

Hello,

We are still trying to deal with the shocking news, but I am working diligently on trying to stay on top of his treatment.  His scans are to arrive at Dr. Kato's office today to get his thoughts.  Also, we are meeting Dr. Zhu at MGH for a second opinion.  My dad's current Dr. at Dana Farber told us that she isn't going to pull in an interventional radiologist or a surgeon because she doesn't think it's an option at this point.  I did not like this response, so I decided to search elsewhere for a Dr. that is going to work with other specialists.  I also have contacted an organization that is made available to me through my company called "Best Doctors."  They gather all of your medical records, upload it onto their systems and the top Doctors that specialize in BDC in the country will give you their opinion(s).  They also put all of your records on a USB drive for you. 

My dad has had one round of FOLFOX and has finally bounced back from treatment.  We don't have a scheduled CT scan at this point, but will probably have one after a few more treatments.  I am so confused because I pulled up his blood work and his CA-19 was pretty normal at 33.6 and CEA at 2.1.  His liver function tests are all normal too.  The CA-19 reading is a reduction from last reading and he hadn't even received the 1st round of FOLXFOX at this time.  My dad's CA-19 has always been a good indication of his situation, so I'm not sure why it's reading normal when he supposively has a "6.7 x 4 cm heterogeneously enhancing lesion
is noted along the resection site and multiple ill-defined hypodense
enhancing lesions measuring up to 2.3 x 1.9 cm scattered
throughout the liver".  Do they just assume these are cancerous without taking a biopsy?

Hi Rosetta,

I almost got sick when I read the last sentence, as my dad is under the care of Dr. Enzinger (the female as her husband also works at DFCI).  When we first went there we were seen by Dr. Abrams and Dr. Enzinger and now we just see Dr. Enzinger.  Before my dad had surgery they didn't tell us whether surgery was an option or not, they just said they didn't recommend it which I didn't like. 

Our last meeting (after we found out the cancer came back) she didn't sound too keen on radiation or surgery, just kept saying sorry over and over instead of giving us hope and coming up with solutions to fight.  I have reached out to Dr. Javle at MD Anderson (oncologist).  Before my dad got surgery with Dr. Kato at NY Presbyterian, I had consulted with Dr. Chapman who said that he didn't think surgery was an option at that time.

I'm hoping I'm on the right track (sending the latest scan to Dr. Kato) and reaching out to other oncologists for a second opinion.

I tried to contact you at the number you listed, but it didn't work.  If you are able to speak, I would love to chat. 

Nikki

Thank you all so much for taking the time to read my post. I honestly do not know what I would do without your support...it really is priceless. The CT scan is already on it's way to Dr. Kato so he can tell us if a second surgery in the future is ever possible. We knew what the risks were and we knew the reoccurrence rate, however, it is just shocking at how quickly and aggressively the cancer came back. I say this because of his wonderful results from surgery and the adjuvant chemo regimen.

Percy - I will ask his oncologist if she has consulted with an interventional radiologist. The thing that frustrates me is the fact that I even have to ask.  You would think they would automatically do this without the patient having to request it be done.

I talked to Dr. Javle via email. He suggested that I look into getting a genetic sequencing done by FoundationOne. What a blessing he is getting back to me in less than 24 hours. He said he was confident Dana Farber was on the right track with the next chemo regimen.

I'm trying to take one day at a time, but my head is spinning. I'm obsessing about getting him on an anti-cancer diet, stressing about him getting exercise, worrying that he isn't going to go back to tong ren healing....all I think about all day is my dad and cancer. I'm angry because he deserved a longer break from all of this. It still doesn't seem real to me because he is feeling better than he has. I don't get it.

Thank you all again.  Sending love and hope. 

Nikki

He is feeling well except for some mild cramping which he's pretty much always had since the Whipple. His energy is definitely depleted - I think the cancer is consuming his energy. All other tests are normal. He continues to gain weight which is great. I just hope the folfirinox works. I just spoke with Dr. Kato's assistant and she is going to have him look at the scan when it arrives. A second surgery is not ruled out at this point. We will have to see what Kato says. I think it depends if he has enough healthy liver. I'm so lost and distraught. My dad is just crying sad

I have family including 3 younger brothers, 29, 10 and 8. My parents are divorced, so I am the only one to take care of my dad in terms of getting him to the right Doctors.  Everyone else is more there for emotional support. They just don't know enough to help me with finding the right care. I just called MGH and am setting up an appointment. I also left a message for Dr. Kato's medical assistant who was in the OR during his surgery. I am in the process of filling out the new patient form for Dr. Javle. I didn't think about Sloanekettering. I agree in that we need a multidisciplinary team...I'm guessing Dana Farber doesn't offer that? Is folifornox used specifically for liver mets? If it shrinks these tumors, do they then use radiation?  I know he is never going to be rid of this cancer which is the hardest part to deal with. His one chanced to be cured was the initial surgery.  Still praying that God gives us a miracle so he can be around for his children. Thank all for getting back to me so quickly. It means more than you know.

Hello,

My dad receive a Whipple and partial liver resection with Dr. Kato at the end of March. He received gem as adjuvant chemo. His scan in July was clean, however his CA-19 had been rising in very little increments. Yesterday we were floored when the Oncologist at Dana Farber told us that he now has a significant amount of liver mets including a very large tumor on the side they resected. Of course we were shocked because since day one everything had been going in the right direction. They gave him a year and said no surgery, no radiation just chemo (folifornox). I don't understand why they wouldn't suggest anything like Y90 or radioembolization. I am sick to my stomach. I can't sleep or eat. I have been his caretaker and advocate and I was so happy when we thought we were coming to the light at the end of the tunnel.  I don't know where to turn. Do I get a second opinion? Where?  I just can't understand how the reoccurrence happened so quickly and the tumor grew to the size of a grapefruit from July to December. Please help me with suggestions. I am so lost. Please feel free to call me at 978-360-9613. Thank you so much.

Nikki

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(2 replies, posted in General Discussion)

Hello,

My dad had a Whipple procedure and a partial liver resection at the end of March.  Since then, he completed one cycle of gem (the last one was on 11/1).  He has had his CA-19 tested multiple times, and the results are as follows:

5/14: 43.9
7/23: 25.5
9/26: 26.1
10/3: 30.6
11/1: 41.8

His Doctor told him not to be concerned, that there are various other factors that can play into the CA-19 reading, however, it's hard not to be concerned.  When he was first diagnosed, his CA-19 was up around 100.  He has a CT scan and will get his CA-19 tested again on 12/5.  I have read that this number isn't a great way to detect a recurrence, but I know that it is used along with a CT scan.  Has anyone experienced a gradual increase in their CA-19 without any other sign of a recurrence?  He looks and feels great and has been gaining weight back slowly.  All of his other tests are exceptional.  Thanks!

Nikki

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(45 replies, posted in Good News / What's Working)

Just another quick update...my dad could not handle the gem/ox combo, so he is now just doing 3 weeks on and 1 week off of gem.  We went 10/3 and they decreased his dose by 25% because of his platelet count.  He will be done on 11/1.  He will get a base line CT scan, then it's just back for regular CT scans and blood work.  His Doctor was not there, so we asked the nurse how often he would get scans and she thought maybe twice a year.  I thought that was a little too spread out, so we will see what the Doctor has to say.  His CA-19 is still hovering around 26 which is fantastic!  Other than the chemo completely making him sick to his stomach, he is doing A OK!  His Doctor called him 1 in 1,000!  I find it very difficult not to keep worrying...I don't want to get too excited, but I feel like we should celebrate his good health.  We are very blessed and we thank God everyday for each day he gives to our family.