Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place.
Some of you know already but for those that don't, Tom was diagnosed with prostate cancer on April 22nd. He first noticed some back/shoulder/arm pain last summer but attributed it to everything but cancer. Lets face it once you get past 40 who doesn't have pain somewhere!? This pain and other even more serious issues finally got Tom to see a doctor this past February. While they couldn't confirm it was cancer yet, they were concerned enough to have him come in for more tests. And then even more tests. Over the past two+ months he had blood work done, chest x-rays, leg x-rays, bone scans, done density test and a biopsy. The results: stage 4 metastatic prostate cancer. The cancer has spread to his left femur, some areas of his spine and ribs, and his lungs. Not curable, but it is treatable. For those of you that are familiar with the PSA scale. Normal is 0-4 ng/ml. On April 5 of this year, Tom's PSA level was 2,673 ng/ml. Didn't even know it could go that high!
There will be several stages to his treatments and the first has already started. Tom is actually feeling a lot better now then he had been the past 8-9 months. The first treatment is hormone therapy and this is something he will have to keep doing all the time now. He started taking Bicalutamide once a day and this blocks the effects of testosterone. He also received his first injection of Lupron which basically tells the brain to stop producing testosterone. The goal is to keep his body from producing testosterone since this is known to feed cancers. And, yes, I have already joked that he and I will get to go through menopause together! Let the hot flashes and moodiness begin! Actually I am happy to say he has not had any of those side effects, on the contrary, so far he had a little soreness in the hip area for a day or so where the injection was, but otherwise he thinks the Lupron somehow made the pain in is back go away. The pain had been so bad that he could barely move some days, and sleep was also elusive. So just having this gone is a very good thing right now.
We know that radiation and chemo are up next. We go in on Monday, May 6th for another consultation. I believe they will discuss the plan for radiation at this time as it was decide that this should come first. The chemo will come after radiation and is scheduled to start in July sometime.
One of his doctors called us on Friday, and said they were concerned about Tom being at grater risk for bone fractures, mostly in the left femur, so he is recommending a consultation with an Orthopedic Doctor - to be set up in the near future. He is also recommending that Tom start getting a Zometa injection once a year to help slow down bone loss. This one does not look like it will have very nice side effects. Luckily it is only once a year and hopefully the side effects don't last long if he gets them. It also means he needs to get any dental work done ASAP and before he gets the injection. First one is set to be in July when he is due for his next Lupron injection.
For our friends in the DeForest/Madison area, here are the names of some of his doctors. Sadly, we know so many others (MANY IN OUR NEIGHBORHOOD!) that have already gone through cancer treatments, so in case any of you had one of these doctors I am going to list them because there is no way I can pronounce some of their names!
Christos Kyriakopulos, MD - he is the team leader, but haven't met yet
Glann Liu, MD - haven't met yet
Douglas McNeel MD, PHD - haven't met yet
Hamid Emamekkhoo, MD - was at our first consultation
Patrick Grogan (Fellow) - talked at our first consultation, and provided followup call on the need for orthopedic consult.
Carissa Dolans, NP - haven't met yet?
Gregory cooley, MD - we meet with on Monday, May 6th
So far we have been at UW-Hospital Carbone Center, Meriter Hospital, the hospital in American Family Parkway, UW clinic in American Family Parkway, but the majority of his care will most likely be at the UW Carbone Center where I am already loving the valet parking!
That is pretty much all we know right now.
Many have already asked what they can do to help. The truth is not much right now. I have reached out already to some friends that have gone through cancer treatments and asked questions - so thank you for your patience and answers. I am sure we will have many more. Right now Tom is feeling good and the goal is to keep it this way for as long as we can. If anyone else out there has wisdom to share we are happy to listen/read it.
While we have not used the services of Gilda's House yet in Middleton, I have a feeling we will be down the road and I know they have helped a friend's family. I am participating in a fundraising event to support this great organization. A couple friends (Margaret and Bill) who have also had family/friends touched by cancer are doing a 6 mile swim across Lake Mendota on June 29th and I am providing kayak support for Bill. So if anyone wishes to help support in this way I am putting the website link below to donate at. It is called Gills for Gilda's. Since it is a team event, the fundraising is also a team effort. All donations are for the whole team and will go to Gilda's House. So thank you to anyone that can help in this way. https://tinyurl.com/gillsforgildas2019