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Mixed reviews!?!?!?

Twinzma
Posts: 191
Joined: Jan 2018

Wow not exactly how I wish a doctor would describe my husbands mets. But it was the exact words the surgeon we saw used! I left in tears despite going in knowing that he would be told not surgical. Surprisigly she didn't rule it out yet, and wants to present his case to a different tumor board where the top liver surgeon in our area will be able to decide. She is hoping that possiby a wedge could be preformed as well as the ALLPS procedure. I am in shock really because we were told by his oncologist that she had ruled out him being a surgical candidate already. 

The mixed review. UGH!!! The CT, Petscan and MRI were all over the place. The CT showed shrinkage, the Petscan shows stabilty and the MRI showed growth! Lousey choice of words to use when coverting to laymen terms but I guess what else could she say it's the truth. The new tumor board meets Tuesday the 3rd so until then who knows. An oconolgy radiologist will also review the scans himself and can ammend the findings on the reports. In the meantime, he started Xeloda this morning and we are still waiting for our insurance to approve more rounds of Erbitux. Also the genetic tests results are still pending. That will decide which chemo is the best. But at least the Xeloda will hopefully keep the disease stable for now while we are in this limbo. 

At best what has come from all this, is that my husband finally realizes that the only hopes for a curative outcome is surgery. He finally agreed that we will go to the ends of the earth to find a surgeon that will operate on him. I agree that we need to rule out local first because travel with this big of a surgery would be difficult on him physically. It's nice we are finding a common ground at last! Even though he fought me to the very moment of seeing her. Litterally we were arguing when she walked in! 

I did ask about the HAI pump again. They used to use it, but abandoned it because the results were not good enough and a lot of patients suffered from liver damage from it. I don't know what to beleive anymore with this. I feel as if it offers us some hope but if it could kill him sooner then maybe it's not the right choice. I guess surgery is what we need to persue. This waiting game is really taking a toll on me both emotionally and physically. My angioedea has been flaring really bad. I wound up in the ER again with my small bowel swelling. They did another CT and found that my liver is growing ridel's lobe. Ironic he may not have enough healthy liver yet I have too much. Oh our insurance company must love us! 

mountainhiker
Posts: 54
Joined: Aug 2018

...and then I'll say it some more.  HAI pumps have been preventing recurrences and getting people who are not resectable to resectable for decades.  The oncologists who talk down the HAI pumps have no clue how to properly monitor liver functions nor adjust dosages on-the-fly so maybe they shouldn't be using them.  MSK has an excellent record using them.

mountainhiker

Twinzma
Posts: 191
Joined: Jan 2018

Not in the least bit tired of hearing about it. It's infurating though to say the least to be given so much conflicting information from the healthcare professionals. Honestly if it can bring someone to a surgical point then it's great. But if it is implanted only to buy time, then I don't see the risks outweighing the benefits. I am praying with every last bit of strength I have that he is surgical now. With so many doctors discrediting it, he is not going to listen to me to get a consult for one anyway. Little does he know though that the back up surgeon I am sending him to, places the HAI pump. Shhhhhh don't tell him! lol 

mountainhiker
Posts: 54
Joined: Aug 2018

If I knew I would never be cured and that the pump would only get me another 6 - 12 months, I'd do it without thinking twice.  That additional time with my wife and 3 kids would be worth it.

mountainhiker

abita's picture
abita
Posts: 565
Joined: Dec 2017

I had my second opinion today, and walked out so full of hope. I got a ct scan to see if I can have it. I asked about the toxicity and it seems that they really do carefully monitor it. 

Twinzma
Posts: 191
Joined: Jan 2018

I hope they can. You don't have many mets at all really! You just need that little extra boost to get you there. Glad that you have experts in reguards to the HAI. They have turned my husband so against it. Hopefully surgery is an option now as I doubt he will consent to a pump at this point. 30 flipping mets 30 of them in his liver I still can't grasp my head around it and It's been 10 months now since we were told. 

plsletitrain
Posts: 253
Joined: Jul 2017

I don't have much input but all I can say is, don't stop until you get the best course of action.  As they say, its not yet over until its over.  And the only "doctor" I'll believe that its really over is the doctor who doesn't have a conrete clinic ;)  Until then, the fight goes on.  Goodluck to you and your husband.  I think you should also make sure you're taken care of.  You don't want both of you to be having medical issues at the same time.  Keep strong.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

It is clear that there are different levels of skill and attention applied to the HAI pump at different times (e.g. 1980s) and places.  Kemeny has a great track record and skillset.  

The total naysayers should be viewed like door-to-door sales peeps asked about a competing product...

mountainhiker
Posts: 54
Joined: Aug 2018

We want to believe that doctors have our best interest in mind; however, as with any profession there are some who are either lazy and don't want to learn about certain treatments or they have enormous egos and just can't admit that another doctor may know something they don't.  There was one local oncologist who told me to forget about the pump as it was "unproven technology" and this dude was one of the biggest jerks I've ever met - if he knew what other people thought of him, he might not think so highly of himself.  When we left his office, my wife was absolutely livid saying there is no way we'll ever set foot in his office again.

mountainhiker

steveja
Posts: 41
Joined: Apr 2017

From what I read, HAI pumps require surgical expertice as well as monitoring, have a high incidence of complications, and the improvements in outcomes are somewhat controvertible.  Still generally better that systemic chemo for SELECT patients with liver mets only.  The NCCN guideline suggests it only at institutions "with extensive experience on both surgical and medical ncologic aspects of the procedure".

I'd try at MSKCC. - best wishes.

 

 

mountainhiker
Posts: 54
Joined: Aug 2018

In the hands of someone who knows what they're doing, they're harmless and may just save your life.  In the hands of a novice, it could destroy your liver.  I have a kid that will turn 16 next year and wants a car.  I certainly wouldn't hand them the keys to a '69 Yenko Camaro.

mountainhiker

Twinzma
Posts: 191
Joined: Jan 2018

That's what I am afraid of...Not in the right hands what is left of his liver will be destroyed. You would think that a city as large as Orlando would have a doctors that has this expertise but no we do not. Tampa, Gainesville even Miami are all off the table. There is one doctor in Ft. Myers though and my husband has agreeded to see him if he is not surgical. 30 mets 30 of them! The more I think about it the more pissed I am at the doctor who did his colonoscpy 7 years ago. You can not tell me he didn't miss something. You don't go from being fine to Stage 4 with 30 mets in just 7 years! Oh what use is it to be so angry, not like it's going to change anything. 

betula's picture
betula
Posts: 78
Joined: Mar 2017

I feel I can relate to your frustrations but on a somewhat different level.  My husband was admitted to the hospital three times in August for what they now think is adhesions from his surgery in April 2017 that were causing small bowel blockage.  We literally had 3 different doctors tell us 3 different things that were causing it in the space of about 6 hours.  This was after numerous ct scans, pet scan, x ray having previously been done.  And I still don't know if they came to a consensus and in a cavalier manner said that he just needs to go on a liquid diet.  As kind of a control freak, not getting answers or consistancy in answeres drives me crazy.

I know how frustrating it is to be the one researching all that is going on with our spouses and trying to navigate the system of second opinions, etc.  I too am having some health issues related to this stress.  I try to keep excercising and spend time with friends as an outlet in addition to working which now is my time away from cancer and all that comes with it.  

As far as doctors, is there any one at the MD Anderson in Jacksonville or the Mayo in Jacksonville?  I looked into those briefly because my husband's mother lives in Jacksonville and thought that if he went there for second opinon at least we would have somewhere to stay.

All the best

 

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

You don't go from being fine to Stage 4 with 30 mets in just 7 years! 

We have had several people on the forums likely do it in 1-2 years.   This is a situation where the rate of earlier misses in a colonoscopy intersects with the rates of evolution of CRC.  Personally from what I've seen, I think the oncologists and surgeons are missing a group of people that are metastatic early on, lost a cancerous polyp and completely healed, or go metastatic  fast.

-----

 Expertise, or even willingness, is often at a regional or national level.  e.g.  ALLPS for a long time was overseas or MD Anderson.  Removal of numerous lung mets by laser is totally overseas, and usually by only 1  surgeon in a few countries; Germany having the most.  The biggest city in a big  state often just isn't enough to find the skill, experience and volume.   Sometimes the only place in the world is some less known hospital with a pioneer.

Butt's picture
Butt
Posts: 247
Joined: May 2018

I had 3 colonoscopies with with 2 docs. They saw a benign polip based on a view and biopsies. it was sessile and they had hard time to remove it. I didn t have any symptoms of cancer. I had a classy IRB and the polyp was in a different area. They finally wanted a colon resection just in case it eventually will become cancer. Cat scan was showing totally benigh. Boom ! Stage 4c after a pathology report and whole cat scan and pet. Got a hai pump. Oncologist didn t like it initially because it was Labor extensive for everyone meaning monitoring enzymes weekly. He likes it now!

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