Mid-Week Update: Pet Scan and Final Biopsy Results

Monday afternoon my dad had an appt. with his oncologist. At this appt he recieved the final results of all of his biopsies as well as the pet scan results.
For anyone who hasn't followed heres a quick recap of the diagnosees:

1. Lung Cancer (non small cell)
2. Lung AND Adrenal Cancer
3. Adrenal Cancer that spread to the lungs

Now this week, we got the final results which revealed that non of the above cancers were even correct, instead of Lung and/or Adrenal cancer, my dad has melanoma aka skin cancer.
So a little background on this...

4 years ago when I was 16, my dad had a mole that started to change. They biopsied it and found that it was malignant and then removed it. After the removal they checked the surrounding tissues and found no traces of it.

Now according to the oncologist, this mole was and is the culprit of all of this. She believes that there is one or two cells that were missed or not seen when the original surgery took place. She also said that had he been her patient then, she would not have said to do anything different than what was perscribed by his dermatologist and general practitioner, that there was nothing we could have done in the past 4 years to prevent this.

I'll include the notes below that were provided to us by the oncologist, these include the diagnosis, and treatment plans.

We are not yet sure what this means longevity wise...I've heard some things about "living with it", and doctors are doing so much more with melanoma than they were even 3-5 years ago. According to ACS (american cancer society) the life expectancy of melanoma, at even the latest stage, is higher than the life expectancy at the earliest stage of adrenal cancer.

So here are the notes...

Diagnosis: Malignant Melanoma (BRAF negative)*

Stage 4: Lungs, adrenal gland, and brain

Treatment: brain-whole prain radiation (part 1)
                          -stereotactic radiation (part 2)
     
                  Lung/adrenal gland: IV medication (Immunotherapy-ipilimumAb-"Yervoy")
                                                   IV every 3 weeks, 4 doses (12 weeks)
Related symptoms: fatigue, nausea, diarrhea, skin rash, lung problems, low blood count

*BRAF is a specific mutation of melanoma.

My dad starts the IV treatment next Monday (Oct 27th)

So that's everything for now...we will update as we continue to go forward.
Thank you again everyone for the support! We are so grateful as we have said many times, and it means the world to us that everyone cares so much.

Hope everyone is having a good week!
Susan

Week 3 Update...Good Dogs, Finishing First Treatments, and Baldness

Well here we are, I can't believe that this all started like a month ago...it's been the most stressful month of my life but thankfully things have slowed down a lot this week. There were no major procedures, no scares (human or dog) and things were pretty low key. So here we go...
Last weekend (Oct 12th/13th) we had a very restful couple of days. A lot of sleeping was going on this house by both the dogs and us. Nothing else other than that really to report
Monday and Tuesday my dad had his 11th and 12th radiation treatments. Dad said his hair started falling out on Tuesday though.
Wednesday my dad saw the radiology nurses and his radiation Doctor, Dr. Leenstra. They found that his blood pressure was going down and his vitals were actually increasing! (they were never bad, but now they are at the high end of good). I'm not sure that this is related to response to treatment, or he's just doing better, but it was good news.
My mom also saw the orthopedic surgeon that day and they learned that her ankle is still healing, and that she can put a little more weight on her leg. We are now in the process of getting a cane.
Thursday my dad had his last radiation treatment for the time being.
Friday (today) my mom and dad went to our hair place, and the wonderful Peggie shaved his head. Yup, my dad is now a baldy. Dad seems to be in better spirits actually since then, and he doesn't look 1/2 bad!!! (plus his head is so soft :P)
I'd say overall it was a good week. The only downside is that the effects of the radiation really started to show this week. My dad has a sunburn look to him on his face, and obviously the hair loss and now baldness. Other than this everything is going well.
As for the dogs...they didn't do anything dumb this week. They are both healthy and Annie has completely recovered from her fiasco with pancreatitis, and Poppy is her normal self...as normal as that is.

This week we'd like to thank the following for bringing us the delicioius meals!!!
Marueen Manion
Sue Edges (freazer meal)

Thank you so much everyone who is following us and praying for our family, we cannot express how appreciative we are.

Hope everything is well with everyone else! Have a good weekend and upcoming week, I'll update again next friday!

Susan

Moving Forward, More Tests, A Port, and Dog Shenannigans

So, moving forward from last week's craziness, we were hoping to have a more relaxing week, which we did, thank god. This week there were plans for my dad to have a port placed and then have a PET scan later in the week, as well as more radiation treatments.

On Monday my dad had his 6th radiation treatment. Other than that, nothing major happened

On Tuesday, he had his port placed. A port is a direct line to a vain in his chest (his is on the right side) that makes it easy to give medications, draw blood, or give him fluid. This was extremely helpful because when he was in the hospital for dehydration last week, it took 5 different people to get the IV line in and 6 to get blood drawn, because his vains kept blowing from the radiation.

Wednesday was quiet as far as my parents went. Dad had his 7th radiation treatment. When my parents returned however, they were greeted by two accidents from Annie, something that NEVER happens. She proceeded to get sick the rest of the afternoon and all night (poor girl). We were hoping it was a bug, or from eating a kringle...

Thursday my dad had a PET scan at 8am, after my parents got home around 10, they took Annie to the vet. She stayed there for the day recieving fluids (She was VERY weak at this point, could barely get up and walk) and run tests. By the end of the day it was found that she has pancreatitis, or inflamation of the pancreas from eating the kringle. The vet expects her to be okay, we are still taking things pretty slow as far as food and water go, but she is getting back to her normal self.
Besides all this, we also recieved the results from my dad's broncoscopy last week, and learned that the masses in his lungs are also adrenal cancer. Adrenal cancer is diagnosed around 300 times/year, making my dad one in a million (in more ways than one...)

Then today, everything was again pretty quiet! Annie had a good day, as did Poppy, they got a visit from one of their favorite people (Nancy) to play while we were out. Dad also had his 10th radiation treatment. Only 4 to go!

This was a much more relaxing week for us.

In addition, we were also able to see one of my best friends who came home from college for a day (before going on a family trip). It was so awesome to see him! We also have family coming this weekend to look forward to!

Starting this week, we'd like to make sure to thank everyone who has brought us meals! My friend Ashley set up a meal train for us, and we are so grateful for it! We have had so many people bring us delicious meals, and we'd like to make sure we thank all of them! We will add everyone who brought us meals so far for this week, and then we will go weekly from then on.

So thank you to...
Nancy T
Dick and Pat J
Jean S
Max and Sandra B
Pegge W
Becky G
Jana C
Jodi B
Jana C
and Trish S

Thank you so much everyone! It means a lot to us, and makes it easier so we don't have to worry about food!

We'd also like to thank the Kolhases for the edible arrangements, and Sue E for the FOUR meals that we were able to freeze.

And lastly, I would like to personally thank the Stevens and the Coombs for letting me have some kid therapy :)

Hope everyone had a good week!
Susan

A Week in Hell

In order to keep up with the constant questions about my dad, my mom, and my family, I've created this blog where I will keep all the information that we learn, for people to read and stay up to date.

Rewinding back about a week a week and 1/2, my dad wasn't feeling well. His symptoms included: 

• slight numbness and tingling sensation in his left hand
• Tiring quickly (ex: mowing the front lawn, then taking a break, then the back where before he could do both without a break)
• Loss of appetite (barely finishing one serving of food, if at all)

 He told my mom that he wanted to go to the hospital...now if you don't know my Dad, him saying he needs to go to the hospital is like, he's about to flatline basically. He NEVER goes and when he does, he has to be really concerned, and that has only happened once in my entire lifetime when his medications were messing with his electrolytes. 

Once at the hospital they hooked him up to heart monitors and an IV, my dad thought he might be having the early symptoms of a heart attack, or possibly mini-strokes. When everything showed up perfect on his heart, they took a chest x-ray which came back abnormal, so they took him for a CT scan. The CT scan showed abnormalities near his kidneys, one of his lungs, and a spot on his brain. At this point they brought in an oncologist who said not to jump to any conclusions, but that they were running more tests. That night he stayed in the hospital and also had an MRI. 

The following morning the oncologist came in, and started talking and throwing all these medical words around. I eventually stopped her and she said it. "I do think it's cancer". 

Shortly after that, my dad went for a lung biopsy, and then we went home later that day.

Fast forward to the following monday, we had an appointment with the radiation doctor, Dr. Leenstra. He was very honest with us on the outlook and the seriousness of the diagnosis. This appointment was extremely overwhelming, as was the rest of the week for that matter. 

The day after (Tuesday) my dad had his second day of radiation and there was also an appointment with Dr.Warren, his main oncologist. She was also extremely honest with us but very comforting, and seemed somewhat optomistic. 

The following day, Wednesday, we got a call in the morning from Dr. Warren. She said that the final stains on the biopsy that was on friday were in, and that my dad not only has lung cancer, but also adrenal cancer; a cancer that is only diagnosed about 300 times/year in the US, making him one in a million, litterally. According to her (Dr. Warren) this is actually a good thing. It means that instead of one cancer spreading to multiple places and potentially being stronger, it is two different cancers that havn't spread as far and are potentially weaker. After that, there was an appt for a broncoscopy scheduled for friday morning. 

Thursday came and went uneventfully (thankfully) with one more radiation treatement. Then, on friday, he had his broncoscopy. When the doctor who preformed it talked to my mom, he said that from what he saw, the lung cancer is not as "strong" as they previously thought, and it may have not been a factor to his symptoms at all. It also "may not be an issue for another 20-30 years". His words, not ours, not sure if he was being optomistic, or if he was just stating a fact regardless of my dad's outcome. Either way, this was awesome news. 

Unfortunatly that awesome news was short lived. St.V's got us out quickly, and we headed to St.M's for my dad's 5th radiation treatment. After that we went to the cafe to get some lunch, and things went downhill. I noticed my dad was really quiet, and when he took a drink of water he could barely bring it up to his mouth...his lips were gray and he was in a cold sweat. It was the SCARIEST thing of my life. Needless to say they called the rapid response team and got him to a room right away. After a 1/2 hour of hooking him up to monitors, an IV, taking blood, x-rays, all that, everyone left him alone and within 30 seconds he was SNORING. And I don't mean just a quiet snore, I mean shake the windows kinda snore. It later would come out to be that he was EXTREMELY dehydrated (had an entire IV bag in just over an hour) and was exhausted. Everything he had gone through the previous week, mixed with my mom having a broken ankle (That's another story) and not getting much sleep had left him completely and utterly exhausted. We were allowed to go home that night and we all slept soundly, even the dogs. That weekend was one of the most restful weekends we have had in a long time. 

During all this, we also had friends from all over bringing us food, sending well wishes, helping us with the dogs (one of which had an e-vet visit last week, but that's ALSO another story) and being so supportive in every way possible. We are SO grateful for everything that everyone has done for us, and cannot say thank you enough. 

So that's everything from thursday when he went into the hospital, up until last weekend (9/27/13-10/7/13). 

An update on everything this week so far will be coming soon. Thanks for reading! 

Susan