Burn out!!

As of the last post today was suppose to be a day filled with Chemo therapy.  Last Thursday after I arrived home due to low counts I got a call from the Doctor at U of Mi.  He had presented my case before the GI tumor board.  Radiologists, Radiation Techs, Surgeons, and Oncologists were all present looking at my most recent MRI and PET-CT scans.  The consensus around the table was they should RFA (Radio Frequency Ablation) on one of the tumors present in my liver.  He told me the others were stable and they would like to watch those and others with repeated MRI's. Not my most favorite test but I guess if it gives the docs a better view why not just suffer through them.

I wondered  exactly what stable meant but never really asked the doc.  A couple days ago we received a UPS package.  Leah opened it promptly to find the Discs of my MRI and PET-CT scans.  I looked a little closer at the package when I got home only to find reports from radiologists at U of M.  To summarize what the report said I have one tumor that is metastatic in behavior.  Another appears as maybe metastatic or possibly cystic in behavior.  The remaining 3 or 4 are believed to be Post-Surgical Cystic.  So in plain English I have 3-4 that are cysts and one that might be on it's way to becoming a cyst.  For those they will be watching via follow-up MRI's  The one they are most concerned about is a small tumor near the upper middle part of the liver. 

Today I travelled to Ann Arbor for an ultrasound of my Liver.  This was the first step in a 2 step process to perform RFA on this tumor of concern.  On the phone call with my doctor I had asked if this was surgery.  He said no and quickly explained this was done through a needle in my abdomen.  My frame of reference was to compare this to my liver biopsy I had in Grand Rapids.  This is the only other time someone stuck a needle in my abdomen.  I assumed sedation and the rest was similar to that time which was a walk in / walk out same day type of appointment.  I was surprised to hear all the details of the procedure (many of which I will spare you).  This sounded a whole lot more involved than I was expecting.  Full sedation, Breathing tube down my throat, and a whopping 5 hour recovery after the procedure.  I realized I likely wouldn't be driving home but sort of expected I would be returning to work the next day.  Leah asked that only to hear the response I shouldn't lift heavy things for a week and I should probably stay home from work for a couple days.  That was even after we explained I had a desk job.  So this whole venture is much more like surgery than I originally thought.  I have always been a big fan of Burn outs and since this is supposed to burn out one of the tumors I am trying put excitement above my hesitation and concern.

This procedure is to take place on October 2.  We need to arrive 2 hours before the scheduled noon procedure and will likely get to be escorted away from the hospital late evening that day.

Prayers for peace and safety and effectiveness of the procedure are greatly appreciated.

--Kent

More news

I missed the text.  I was teaching along with the 4's preschool teacher, the first day of school.  I love the first day.  All those cute adorable kids walk through the door in their first day outfits and handsome hair du's and cute pigtails and braids.  My heart just wasn't in it today. Don't get me wrong I loved it but....  while I was having fun, my other half was in Grand Rapids having a lab and getting ready to have chemo?  That is when I received the text. " I am on my way home, I am not receiving chemo."  What? Why? Well Kent earlier this week has had some sinus pressure and he thought it was allergies but now is most likely a cold.  His Neutrophils were 200 and normal is 1500 to 7700.  Wow ! His white blood count was low as well.  So we have been pushed out 4 weeks without chemo.  He received two treatments this round and we were pushed out a week due to a meeting in Ann Arbor with a Liver Transplant surgeon last week Thursday and now due to a cold.  Next week will be week 4 and yet another attempt to get chemo.  

In Ann Arbor today a GI board met reviewing Kent's case.  A group of Dr's. get together and talk about what is possible and doable for Kent  giving him the best possible quality to his health.  Today at one o'clock this afternoon, Kent received a call from the surgeon, and he told Kent this.  One tumor would be able to have a (RFA) Radio Frequency Ablation, and the other tumors are stable at this point and that he thought chemo would continue to be the best option for those.  I did ask Kent what they were thinking about the lymph node? At one point the surgeon was thinking that the lymph node was cancerous.  Kent said, he had forgotten to ask that, so we have a call into them for answers. 

 At this point, here are the dates and info regarding future appointments that we will be asking for prayers for  1)Dr appointment on Wednesday Sept 18 to discuss the Ann Arbor treatments with Kent's oncologist 2) Chemo on Thursday the  Sept.19 th 3) Radiologist appointment on the 23 rd of Sept. to get answers on Theraspheres 4) Chemo again or learning when we would do RFA whatever comes first.  As you can see Kent has quite the busy schedule.

We want to tell each one of you that we would not make it without any of you.  You all play an important role in helping us get though this journey.  Weather you have made us a meal or given us a hug, prayed for us, sent us a email, FB message, or helped us in anyway driving us or giving Lydia extra love , we CAN NOT say THANK YOU enough.  We are blown away by the Love and care.  As your busy fall school year begins I pray all those moments you have cared for us will return to you .   I pray you have a great week.  Stay tuned to the next week and we will update what is happening. 

You take the good, You take the bad, You take them both and......

Today I took a trip to Ann Arbor to see a Liver Transplant Surgeon.

We asked him whether I was a candidate for a transplant.  He said no due to the fact I would have to have anti Rejection (Immune system suppressant) the cancer would likely spread all over and be deadly.

So what are the facts of life you ask....

First of all Systemic Chemo is a good option and currently it is working so we are going to continue with that.  For localized Chemo he usually doesn't begin those until Systemic Chemo begins to fail.  One of the Localized Chemo options is called Hepatic Artery Infusion.  He also said though they do very few of them they only trust very few Oncologists with the care of the pump that would need to be installed.  He would need to talk with my Oncologist first before ensuring they can do this option.

We brought up TheraSpheres but he didn't really talk about them much other than to say they do them there.  We brought up our hesitation and the fact that Moffitt Cancer Center in Tampa stopped this same treatment.  He responded with the fact that they still did them.

He still wants to see the MRI Images I had taken in early August since all he has is the report from it.  He will look at that and then show it to their local Radiologist.  After which he will be presenting my case to their GI tumor board.  He will then have the opinion of Radiology, Radiation docs, and other Surgeons.  He will call me after talking with the GI Tumor Board.

The only other thing we heard that we weren't expecting is the fact that he thinks the enlarged Lymph Node is Cancerous.  The treatment for this would be systemic chemo.  Since we are already doing this I guess we nee to decide on the next treatment option.  He may decide to have the Lymph node biopsied to prove this theory.

Until next Thursday while under Chemo I will get a call from this doctor to hear what the Ann Arbor Tumor Board talked about.

More from me at that point.

--Kent

A mazin Blue

Previously my surgeon wanted to wait and watch the tumors.  This is not an option according to me or my Oncologist.  Thus the reason we started Chemo last Thursday.  Yesterday I got a call from my Oncologist to talk about treatment options.  Two options are TheraSpheres or Hepatic Artery Infusion.  During our conversation he indicated He would personally choose TheraSpheres over Hepatic Artery Infusion were he in my case.  I respect his opinion but still have reservations about the procedure.  He is referring me to talk with one of the Radiologists who perform this procedure in town.  This will allow us to get our questions answered about TheraSpheres and Carcinoid vs Carcinoma Cancer.

He also thinks it wise for us to see a second opinion to help us objectively decide which treatment option would be safest and best.  He is referring us to University of Michigan to get what we hope is an unbiased opinion. 

Both of these appointments should happen within the next few weeks.  Until then we are hanging on for the ride.

--Kent

Who let the tumors out??

Yesterday I met with the PA from my oncologists office.  We discussed what happened since the Pet scan done middle of July.  In that time we met with my surgeon several times, schedule and received an MRI and had my case presented before the GI Tumor Board. 

Yesterday we brought up the question of how many tumors actually existed in my liver since we hear several different numbers at each appointment.  The PA and the rest of us read carefully through the MRI report to count the number of tumors.  We all came up with 5 Tumors including the 2 that are growing.  Again due to the number and the varied location of these tumors RFA (surgery) is not an option.  My oncologists also agreed that wait and watch is also not an option.  We don't have real answers on whether TheraSpheres are a safe option or whether we can push forward with Hepatic Artery infusion.  We will need to talk with Intervention Radiologist to get all our questions answered about safety and overall procedure.

Since we all felt Wait and Watch wasn't an option I was tossed back into a chemo schedule that started yesterday.   I will receive it every 2 weeks until We make a decision on the next major step of treatment.  Unfortunately I did not feel well the evening of treatment yesterday.

I'm hoping we come to an agreement on treatment soon.

--Kent

Where are the answers?

Yesterday we met with my liver surgeon to go over what the MRI showed and what the GI tumor board had to say about my case.

The MRI taken August 6 shows the 2 tumors but also shows some other nodules - probably microscopic at the time of the PET scan taken July 18. He is not sure they are cancer but given everything we know - more than likely they are cancer. The two bigger/more visible tumors have grown a few mm since the PET scan as well. But they are still considered very small and He does not feel that he would be able to see them well enough to do an ablation on them. He is still very much wanting to do a TheraSphere treatment. We again told him our hesitancy to do TheraSpheres due to the fact that the Hospital Leah's Dad had this done at is no longer doing this treatment.

We also asked about a treatment called Hepatic Artery Infusion.  This is a treatment where a pump is installed under the skin (via surgery).  This pump delivers Chemo (probably the same flavor as I was already getting in my pump) directly to the liver via the Hepatic Artery.  My surgeon was willing to consider this treatment but has only done this a 7 times himself and claims none of them have been very effective. We feel as though we should find someone with more experience doing this sort of therapy 

His options of preferred "treatment" were to wait and watch or TheraSpheres. Since the tumors are already showing signs of growth when the chemo was stopped, neither of these are favorable options for us.

As far the GI tumor board and My case, My surgeon has not presented that yet.  He was on vacation so that will happen this Thursday.  I need to contact my oncologist since sometime he attends this meeting and sometimes does not.

I also will need to follow up with them after Thursday to see what information I can gain from them.  I have an appointment with each Doctor next week.

 

While I meet with my oncologist and talk about maintenance Chemo and likely this Hepatic Artery Infusion.  We'll obviously ask about other alternatives for treatment.

Prayers are certainly needed for direction; for stopping the growth of the tumors; for peace of mind that we are doing the best we can do given all the info we have been given.

What's up Doc??

Since My last post here we had an Appointment with my Liver surgeon.  Due to the location of one of the remaining tumors he is hesitant to do surgery.  I can understand his risk and hesitation but his alternative he suggested is TheraSphere therapy.  This is a therapy our family is very familiar with and not very excited about for various reasons.  One of those is the Hospital Leah's dad had his done at has since stopped doing this type of treatment.

Since that appointment I have had an MRI to tell exactly the location of the tumor in relation to the Blood Vessel.  I am personally hoping the distance allows for RFA (RadioFrequency Ablation) instead of us finding a suitable alternative.

Early tomorrow morning I meet with my surgeon again to find out what he and the GI Tumor board have discovered about my case.  This appointment is effectively a fork in the road for the future of my treatment course.

More  after tomorrow's appointment

--Kent