Adjuvant use of Keytruda?????

Thanks for the info, Marion. I thought that was how it was for the scans, but you know how it is….after a while, all this stuff can tend to blur together and y ou can suddenly be uncer tain about everything. Chemo brain doesn’t help either.

The surgeon won’t committ 100% to the idea that the left lobe issue is scar tissue /healing from the surgery, but he was pretty confident and did not see a need right now to rush in to look at it or remove it.

As for the s cans…..he said that one of the best radiologists had read it….someone with a lot of experience from what I gathered. I’m sure that in the process of reading these things, there can be plenty of disagreement over what something is or means. We’ve looked at the MRI of my liver numerous times over the past two+ years and I still can’t see how they find anything. When they point it out, I can see it at least.

We started to use the MRI of my pelvis/abdomen when I had some potentially allergic reactions to the CT contrast. So , we only use the CT without contrast for my lungs. The rest is done with MRI of my abdomen and pelvis. My original oncologist at Mayo was very happ y to have the MRI scan for a better picture of the pelvis. The MRI does take quite a bit longer time…..about an hour….and a lot of breath holding during that time…and being completely still…no moving. ANd….you have to be mostly into the narrow tube that bothers some people. I was okay with it……but since the pictures of are of my pelvis….my head isn’t THAT far from the end fo the tube . It’s managable. The other good thing is that it also does limit the radiation exposure that the CT gives off. I like that aspect. Howev er, this comes at a price….as the MRI is more costly.

On that note….I just had to change insurance to a Me dicare plan on July 1 (timing sucked) because I had been on disabiity for two years. Since I have CC and am on disability, all I can get is one of the “Advantage” plans. I got one of the best ones i could fine, but now I have NO idea when it’s going to pay…and finding doctors in network is difficult, even with their book for reference. Next April, when I turn 65, I will then be able to switch to a regular Medicare policy with a supplement . But this year will be kind of crappy ….because I lost my old policy Ju ly 1, af tere having almost met the out of pocket for the year, only to now have to start over on the out of pocket for the 2nd half of the year. Then, I will do that again as of Jan 1 …..and then in April when I am 65, I will switch to a supplementa l policy with medicare. Dep ending on what all I do for treatment…. I will probably have to hit the out of pocket three times within less than 18 months before they start paying fully for things. That’s going to bite.

Th anks again, Marion. You are a wealth of information.

Tomorrow is another day……r ejoice and be glad in it.

Julie t.

Marion,

Yes, in my case, it could be a chronic illness, but if he is accurate in that we are in a mopping up situation, there could be a time when no more tumors show up. We’ll probably never be free of the anxiety and fear of another recurrance, even is a lot of time elapses. But, I am now looking forward to a time when perhaps no more will show up.

Question: It was my understanding that the plate thickness of 1 cm referred to the CT scan, but that the MRI is more sensitive and can detect the tumors as small as 5 mm . Is that right? I do have a CT scan without contrast but only of my lungs. I get an MRI with contrast of my abdomen and pelvis. It was in that MRI from April that the surgeon saw the 8 mm tumor which is now 11 mm (1.1 cm). I want to make sure I un derstand this right.

I didn’t think about the surgeon being the one with the most accurate knowledge of my liver, but that makes total sense. I’m soooo glad I had that consult with my GP and she advised me to do the face to face consult instead of having the oncologist discuss it with him. I LOVE my G P….she is a very special woman and doctor. At the end of our consult….. she knew there was really nothing medically she could do for me, and then asked me if she could pray with me. That is the s econd time she has done this during the course of this disease.

No phone call from the oncologist about the results of the mutation lab tests YET. This is frustrating to have it drag out so much longer than they originally said it would be.

Julie

I want to thank those who responded to my plea for help and encouragement Monday night.. I was having one of “those” anxiety moments, which hits me at times when things are just too uncertain with which for me to deal .

UPDATE:

The face to face meeting with the surgeon was the best thing I could have done. I’m so glad I consulted with my GP and she gave me that advice. Sometimes, we forget about going back to step one and involving the doctor who knows us best (or should know us anyway). I have a 40+ year relationship with my GP…. and she knows me very well. She was the one who found my tumor originally.

The Consult: The surgeon was again, a really nice guy and a background…. he also does research into CC, so he is, himself, very knowledgable about CC . He talked a little first and listened to a few of my questions and concerns. Then, he looked at the MRIs from my July scans and also the scans from April.

First, the suspicious area in the left lobe for being malignant : He said he did not believe that was a malignancy. He believes that it is for lack of better words, an inflamed (my word choice) due to the surgery he did on it there in Dec of 2015. He also said that he uses some kind of material to pack against the cut edge of the liver at the end of surgery to help stop the bleeding or to keep it from bleeding. The body eventually absorbs this over a long period of time and creates a sort of “bloob” (his and my word) in that area. He went to the April scan and compared the same frame side by side and in the July scan, the area had actually gotten slightly smaller. In regard to the lymph node that was slightly enlarged…it was the same size as it was in April in the scan…..and the surgeon indicated that these are frequently seen along side the liver after surgery….and indication of the liver having been operated on…. thus the ly mph node was more “inflammatory” in nature…not malignant. I had enlarged lymph nodes before the first surgery ….they were removed and all negative, so I do “buy” this explanation.

Next: The growth in the right lobe has classic signs of a malignancy, which I already knew from research. The visual of it is a classic round h alo, donut or target look. It HAS to be dealt with. Initially, he indicated that this was very manageable by ablating it …as it was in a perfect place for getting all of it. He then looked at the MRIs…comparing both…on a hunch…..and the tumor WAS visible in April after all.. The radiologist had missed it on the MRI when he viewed it for comments. In fairness, the tumor was at the April scan, only 8 mm , so very, very difficult to see…and at this point, we are looking for it, knowing exactly where to look . The good news is…that by seeing it on the April scan…. and knowing its size then….and comparing it to the size in July, which was 1.1 cm (or 11 mm), he said this is indicative of a V ERY slow growing cancer. He said he still believes as before, that this tumor and the tumor wh ich appeared in Nov of 2015 were cells that were there in my liver at the time of the first sur gery in FEb 2014 . The fact that the cell crossed over into the right lobe could be that a cell entered the blood stream from the left lobe tumor and circulated throu gh my body and eventually lodged in that right lobe where it has taken all this time to g row large enough to show up. That’s a guess anyway.

So, if he is right, then he sees this whole situation with a single tumor popping up here and there as a “mopping” up after the main surgery. The fact that the cells have taken this long to grow from the initial surgery again would indicate a very slow growing cancer. (Note that CC t ends to be must faster and more aggressive ….it i possible that the adjuvant chemo beat these cells back for a while before they started growing again.. There could have been other cells that were actually killed by the chemo leaving these stragglers for us to mop up. We will never know. For now, the situation isn’t as “dire” as we thought it was when listening to the oncologist.

The Plan: The surgeon called the oncologist and discussed the situation…told him that he did not believe the left area was a malignancy and reasons. Then, he discussed the ablation of the right tumor. The oncologist apparently presented his case for doing FOLFOX chemo first…..as long as there was the tumor there,…they could use it a a marker to see if the chemo would reduce the size and if so, they would know if it was worth trying it again if need be ( I guess this would be if multiple tumors suddenly appeared). Since the surgeon thinks this is very slow growing compared to most CC, he said there is no problem doing the chemo for the two months suggested and then at the end of that time, he would ablate the tumor and if another popped up, he would do that at the same time.

The final wrinkle in all of this is that the 3 mutation studies are STILL not done so no answers. They were “hoping” that it showed an MSI (microsatellite instability) mutation, which happens in about 15-20% of CC patients. In that case , they may want to throw Keytruda into my treatment using it “off label” . It was indicated to us that if I had the MSI mutation, that it would very likely be approved for compassionate use. That presents a financial concern because of the huge cost, but as Matt indicated there are others who have received Keytruda from Merck pharmaceuticals for free. The other option is to try to get into a clinical trial they have for MSI if I have the mutation and qualify for the trial. This is an area that yet needs to be discussed, because, at first the oncologist indicated that if I tested positive for MSI, then they ‘d try to get me into the trial…and if I’m not positive for that (or a couple other mutations), then they’d start FOLFOX. Now, it sounds like they would do F OLFOX first anyway….. so there are things to discuss before anything gets started.

Thank you again to those who responded and threw out life lines. I was in a very “bad” place emotionally that night and couldn’t deal with anything…there was just too much uncertainty. Today, after speaking with the surgeon yesterday, I feel more in control again. He ha a way of dealing with things that is very comforting as well as knowledgable. He exudes quiet confidence. He is the opposite of most surgeons I’ve met…..not boistrous or full of himself. When he enters the room…..he’s quiet, but pleasant…not drawing attention to himself and his team follows suit. When he talks with you, he’s soft spoken but confident…and never appears to have his hand on the door knob, ready to bolt the room at the first opportunity. He gave us numerous occasion to ask more questions….during which there were long silences when he could have just cut it off and left, but he didn’t. His own team refers to his surgical skills as “meticulous”.

Oh…. his name is Dr. Rory Smoot…and I would absolutely recommend him.

I’ll report back when I hear the results of the mutation tests.

Julie T.

Lainy….I didn’t think about the alcohol cure for my anxiety …….perhaps that is what I need. ….maybe a nice White Russian perhaps. But, I don’t get silly on booze….I just fall asleep….so you’d be there being silly and I’d be snoring in the corner.

I do have some Lorazipam leftover from when I was doing chemo. I may get it out and take some ….but I don’t want anything causing me to be fuzzy thinking when I’m talking to the surgeon either.

I wish I could talk with Dr. Javle….but when I called for an appt with him…and they found out it was for a consult, they said that he only does those Dr. to Dr…..and that I would not go down to Houston to see him in person. (We were ready to go ). It just didn’t sound right… …I swear that I’ve read about other people going down there to get his advice. Right now, I”m shaking my head….I don’t know what to think about any of this. Maybe I’ll get myself pulled together tomorrow.??????

Julie