Ashley's Clinical Trial Adventure

09/11/2024

Last Tuesday evening, Josh and I drove to Omaha to stay at Hope Lodge. I had a Y-90 scheduled for Wednesday to do mapping and then surgery to place radioactive seeds on the left side of my liver Thursday morning early. The mapping took about an hour and a half and the placement of the radioactive seeds took about a half an hour. Everything went fine with both of these, other than me working myself up prior to each. I did end up getting hospitalized for two nights for pain control management. I was able to get discharged finally on Friday afternoon - but honestly all the doctors, aides and nurses were fantastic!

I struggled when I got to Hope Lodge as the couch and recliner they had in our room were super uncomfortable so I spent Friday evening through Monday morning in the bed and the only tv they had was in the sitting room (the other side of where the bed is). I believe on Saturday afternoon I woke up sick and because of Hope Lodges rules I had to drag my sick ass downstairs so that Josh could make me some oodles. (They have a community kitchen downstairs.) They do not allow anything upstairs in your room unless it's water or it is something in a spill proof cup. I get not having food in your room that has a strong smell, because yes, for someone that is on chemo it could be very nauseating. I feel like when making these decisions a cancer patient was not involved. Having to sneak crackers or something with no smell up to the room is beyond ridiculous in my mind. I very much appreciate the free stay while we had to be there for six days, but I think next time, would much rather pay for a hotel - a lot more comfortable and no rules.

We met with Dr. Joel on Monday afternoon and decided to start Keytruda (an immunotherapy) that day and then Lonsurf either Friday or when I am feeling better.

I am VERY sore as when they did the Mapping and placement of the radioactive seeds, they went through my groin into my liver twice. My groin area is pretty bruised still. On top of everything else my back hurts 24/7 and I've had a heating pad on my abdomen since we got home Monday evening. It is a lot for me to walk from the recliner to the bathroom let alone fill up water, tea, or get food. I am hoping this starts getting better soon as our Interventional Radiologist wants me back in a couple of weeks to do the right side of my liver and ovaries.

07/20/2024

Decision when you are first are easy, especially when you are and there is a in your about to it. You have the , you have the , you have more surgery, and you have more chemo. You then celebrate when you’ve listened to everything that have told you and the scans show no evidence of disease.

Very shortly after, your ’s says nope, we don’t have your , is coming for another ! Again, decisions really aren’t horrible to make. The doctors suggest this and that and you agree as what they are telling you makes sense and thankfully even though it is rough and you, most of the time, feel as though you cannot do this one more day – you do.

Drug after drug comes along. They put you on something else as the regimen previously . This is working out exactly how they had told you it would until you come to the and your options are getting less and less. Decisions become harder and harder as the doctors can tell you what to do but at this point you’ve done so much that you know more and more about and how the cancer is finally and how it is making you . They also say you are in the , and they will give you what you would like to try (within reason, of course). Essentially leaving the in your hands.

You become to make against what the doctors are telling you, but your and your are pointing you in a different directions. These decisions are , something that is extremely serious and not to be taken lightly. The doctor isn’t necessarily telling you that your youth is something that is backing you (as they did before) because even though it is still true, you are a lot sicker, a lot weaker and have a 5 month (ish) pregnant belly you’ve been carrying around for ten months. The regimens that you will be given have to be given in a different way as things have changed with you over the course of the .

What we have been hearing for awhile now is I am down to the last couple of options. called a couple of weeks ago and offered a phase two clinical trial. After a lot of research, a LOT of crying, a lot of conversations and a single 🎆 I made the decision to turn it down unless they come back with a lot more data to show us.

I would like to retry and because when I did it, I went from being on the couch (ish) hours of the day and sleeping ALL the time to doing laundry, loading and unloading the dishwasher - what I felt was a complete 360! Dr. Bent in would prefer me to try again instead of doing Lonsurf and Avastin because technically according to them and what they saw on the scans, I failed on Lonsurf and Avastin. FOLFOX is the regimen that I tried last year and didn’t fail on. It is also the drug that they put me on, reduced the dosage fairly quickly, and then took me off because I was starting to get in my feet. When I got this regimen, I would get chemo on a Monday or Tuesday come home go to bed and get up Friday or Saturday. I was very sick and if I remember correctly, I quickly on this regimen. Recently another options has come to light that I would jump at as I feel like the things I have looked at seems to be in order and patients get better not worse. The problem is doesn’t cover it and from what I understand it is very – like $45,000 and up. (I still need to talk to them directly about what my treatment itself would entail and if they would even consider taking me as a patient).

They could put me on another clinical trial if one comes up and I am eligible for it and then finally is the other drug that is pretty much a step down from ( ). Then as always, we hope and that there will be another drug that comes along and works with my .

The problem here is and always has been the fact that I have a the doctors cannot totally figure out. The is that the tumors are also (which is rare). This pretty much means that there is a shield all the way around the tumor that is protecting it. (Someone can correct me if I am wrong, but I do believe that is how someone explained it to me).

The CT scan that I will have on Monday will tell us how big it is right now since I have been on nothing since I finished up Lord Farquaad a couple weeks ago. After that I will have to make a final decision as to what path I will be going down next. I know for a fact it is all growing and things are going to look worse, so I am completely prepared for that which makes the decision even harder to make. My is again growing, the tumors are harder again – not soft at all, and there is a small, hard bead like spot right under my rib on my right ride that hurts to the touch that I have no idea what it is, but anything new in that area cannot be great. I assume my are what is hurting currently – it feels like period cramps right now almost all the time and that is with a on constantly. It is now changed every other day, and the dosage was raised. I still have to take medication on top of it to get me through as well as baths. (Thankfully I am not a horse in this lifetime)

Stress should be non-existent in my life right now (I am laughing hysterically to the point I am crying in my head about this – mainly because people don’t give a s**t and literally throw stress in my face recently). I have been and am struggling a LOT with this. I try not to leave the house a whole lot other than to go out to get fresh air with good people doing fun things. I cry when the wind blows a different direction. I know I am a touchy feely type of person – I love hugs, and I usually like to go out and see people, but if I am out and about and you see me and I am crying, please refrain from hugging me unless I come to you – it will just make it a lot worse. Once I get started crying, I am a full on now.

This is a LOT to handle for both Josh and me. A LOT. Monday will come around; I will be sent through the scanner and then we will have a conversation with the doctor via telephone on Wednesday. The 30th is my 37th (as well as Emmy girls 3rd birthday) and we have plans that week (We will be gone – doing non-stress stuff). Nothing will happen, most likely, with the cancer until August 5th unless the scan shows that it is really, really bad, and we need to act ASAP.

06/24/2024

Father’s Day we spent the day in our happy place - on the water!

My husband is one of the best dads out there. The love for his children shines through in this picture and the ones previously posted.

When I asked Josh what he wanted to do for Father’s Day he said nothing. Next thing I know he is planning a day out on the water. He knows exactly what things we love doing as a family and fills us with so much happiness!

We had such a great day with lots of laughing and even more love. August of 2016 I came into their lives - Josh was 31, Alexis was 6 and Kolby was 3. I have not been there for the kids since birth, but I have been blessed with watching their love for their dad grow each and every year! Even more blessed to feel that same love from both of them.

I adore this family of mine and look forward to years and years to come with them 💙🥰

05/30/2024

05/29/2024

The last chapter of my book is going to be called "Words of Wisdom". This book is very personal for me so I open up a LOT (wait till you see the cover of the book!!)

If you are someone that has/had cancer and you would like to add your words of wisdom (something that may help the next person deal with side effect, deal with the diagnosis itself, something doctors may not have told you but something that ended up helping you that you learned from a friend/family or someone you met through cancer!) please email me with exactly what you would like it to say.

Caregivers, please give your words of wisdom as well. My hubby could probably write a book on all the things we have learned in the past three years! Whether you are a fellow Cancer Survivor or Caregiver, I would love to add your Words of Wisdom to my book.

If you'd like your picture with it, add the picture you would like used. If you would like your name added, write it exactly as you'd like it put in the book.

Please, add the minimum what stage of cancer and what type of cancer. Any questions or concerns, you can message me here or email me!

My email address is - ashleypedro459@gmail.com

Deadline for this is Wednesday, June 12th, 2024.

05/23/2024

Thursday, May 23rd, 2024, Imagine laying on your side, right or left, and not being able to breath as easy and having a little pain with it. Imagine just sitting in a chair watching a movie or reading a book and all the sudden you don’t feel like you are getting enough breathes as you should and then start thinking about it too much and almost put yourself into a panic attack. Imagine going up the stairs and starting to get winded within a couple of stairs. Imagine getting nauseous more often but not really knowing why. Imagine soaking in the tub, and just having an odd feeling of not getting enough oxygen. This is what starts happening when I am to the point that they can drain about a liter off my left lung. It goes almost from not feeling really any different to almost sending myself into a panic attack several times throughout the day because of not feeling like I can get enough air to my lungs! I used to think I would die in the car. Now my biggest, horrific fear is not being able to breathe and dying a painful death because of such. I cannot even tell you how much that scares me every damn day. If you have ever had issues with your lungs or breathing, then you probably know what I am talking about. I am not sure how many thoracentesis’s I have had, but I have definitely made it to the point where I know when I am filling up and when it is time to get drained. When Dr. Pieper drained me a little over a week ago today (getting a liter off) – May 14th, 2024, I could immediately feel a huge difference! It was like an elephant was removed off my chest and I was free again. Unfortunately for me, my left lung has been drained so many times that when he went to put the needle for the lidocaine in, he started hitting fibrous tissue which means there was so much scar tissue there from previous thoracentesis’s that had been done that was not allowing he needle with lidocaine to go in as far as it needed to. This made him have to move down lower and try again. If you look at the picture, you will be able to see several areas where he tried to get in and then was able to finally get the needle in so he could put the catheter in as well and finally start the process of draining me.

It is comical to a point until it is scary that when I was knee deep into the cancer, I had made the comment that I wanted to get back to the weight I had started at prior to cancer. Well, I can tell you that in October 2023, before I had 6 liters drained off me, I was a whopping 206 pounds which would be the heaviest I have ever been in my entire life. On the 18th of May I weighed in at 147.9. That is a whopping 58.1 pounds lost in 7 months. Putting it into another perspective, measuring around my belly when this all started that I was at the biggest, I was 40inches around, then 38inches around and most recently, 34.5 inches around. Some of you may say, that is great! It is really not as I am doing nothing to lose this weight. When you have cancer and you start losing weight without trying to do so, it is called wasting away. Obviously, some of it has to do with fluid that is drained off – my weight will roller coaster a little bit because of that depending on how much fluid is actually taken off each time it is drained. I have to believe some of it has to do with tumor shrinkage. 22.6 – 17.6 might now sound like a lot, but if you start looking at pictures, or see me naked, which obviously not many people do, you will certainly notice a difference in my belly and how much it has gone down. Then, of course, when my belly was stretched to its limit because of the size of the tumor as well as the fluid I had in there, I couldn’t eat very much at all. Very, very small meals throughout the day. I remember when mom was here with us the end of last year when I was horribly bad, she made me a big bowel of coco wheats because that was what I was eating before when she had seen me. I looked at her and tried nicely to tell her that my belly might be able to eat a fourth of what she made, possibly not even that much. Thanksgiving I wanted to eat so much food because it smelled so good, but I knew I wouldn’t be able to and would have to just eat a little throughout the day, otherwise I would either get sick, or fill myself up to the point where I was super uncomfortable. I am definitely able to eat more now and eating chocolate is something I am able to enjoy again, but my body can still only take in so much and then I am done. I am hopeful these tumors will continue to shrink, and I will be able to get back to the person I was before (of course not the weight I was before – maybe gain 10 more pounds starting where I am now!) I just have to laugh when I think about not even a year ago now when I was trying to get to 160 pounds…that is all I wanted. Now being not even 150 pounds and scared, wanting to gain at least ten pounds back. Life is funny like that sometimes! I need to go through the rest of my closet and get rid of a lot more clothes because I literally cannot fit in even the stuff I just bought in February for Cancun and Aruba! The dresses that I bought when I was planning for summer of this year are even too big right now. It is crazy having to get a completely new wardrobe and definitely not cheap hence the need to clean out and get the rest of the wardrobe listed and sold! Tuesday of last week I started my fourth month of Fruquintinib and should be finished with it on June 4th. We will then be ready to fly to Texas on the 9th to be prepared to have bloodwork and CT scan at 6:15am and 6:30am on the morning of the 10th and finally meet with Dr. Bent again and hopefully continue on with good news again! As always, we appreciate all the love and support, we get from our small circle of friends and our families!

Oh, and some exciting news for at least me – the cover of my book that I am working on to getting published is completed and I am stoked to show everyone when I can get it out there! Also, because of being so excited about what I have chosen for the cover, I have been pushing myself to get the damn book finished and it is about ready to be sent to a couple of people for critiquing, proofreading, and editing! I am so excited and proud of myself for starting something and almost being to the point of finishing it! Happy Memorial Day Friends! I hope you have the best and safest time with your friends and families! Remember if you are traveling to watch all your surroundings, and if you plan on going from place to place and drinking, make sure to have a designated driver. You don’t want to take the lives of someone else’s family because you decided to be a du***ss. Also, please remember why this is a holiday we are able to celebrate! Remember and take a moment to honor those who have lost their lives defending our or their country! We have the freedoms we do because of them.

































Fight Colorectal Cancer
Columbus Community Hospital Nebraska

05/14/2024

Please, if you have the means, consider helping out really good friends of ours! Click on the link to read Crystal's story! We love her so much and she is just one of those people that is the best of the best and deserves as much!

Crystal and Jarod have recently received the news from her doctors that he… Trisha Zimmer needs your support for Friends and Family, the Ott's need our help!!

04/10/2024

Meet Dr. Bent - she is one of the best at MD Anderson! We love her and love the fact that we are lucky enough to have her as a doctor! She has always taken such good care of us and she honestly wants the best for me!

Josh wanted BBQ as Texas has some of the best BBQ, so that was dinner Sunday night when we landed!

We stopped at Bucee's on the way to Galveston to get a little something for someone special 💙

When we got to Katie's Seafood House I ordered the Blue Crab Mac And Cheese. I have never really been disappointed at the things we have had there - but I was a little disappointed in the lack of crab on top of the mac and cheese. It was more like a sprinkle of crab 😞

The last plate of food was our celebratory meal at the airport - a shrimp and fish Po-Boy. It was delicious although I was not able to eat all the fries!

For the people that didn't watch the video - we got good news at the doctors appointment with Dr. Bent yesterday!

Lungs and Pleura: Stable large volume left pleural effusion with compressive atelectasis. There is mild nodular pleural enhancements in the left hemithorax. Additionally, there are areas of right pleural nodularity, for example;
*1.8cm nodule in the right posterior thorax series 3, image 61 which appears to be slightly decreased, previously measuring 2.2cm.
*Additional pleural-based nodule measuring 1cm series 3, image 97 also decrease in density.

Hepatobiliary: Extensive post surgical changes of right hepatectomy. No biliary dilation. No cholecystitis. Interval decrease in size and density of liver lesions, for example:
*at the surgical margin now measuring 2.1 cm series 3, image 149, previously measuring 2.4 cm.
*Segment 4 now partially cystic measuring 5.4 cm series 3, image 182, stable in size but decrease in density.
*Additional liver metastases appear to be also decreasing in size and density.

Peritoneum/Retroperitoneum: Small volume of abdominopelvic ascites. Large abdominopelvic mass has significantly decreased in size, now 17.6 x 11.3 cm series 3, image 245, previously measuring 22.6 x 12.9 cm. The lesion contains areas of soft tissue density and septations compatible with adnexal metastasis.
Peritoneal metastases along the right paracolic gutter has significantly decreased in size, now measuring 2.1 cm series 3, image 184, previously 2.3 cm.

04/09/2024

Answer to Bonus Question - Katie's Seafood House is our favorite place to go when we visit Houston! We have to drive about an hour from Houston, but it always well worth the drive!

Standby for the rest of the news 😉😘

04/09/2024

Since leaving D.C., the size of the Colorectal Caucus has DOUBLED from 14 to 29 members! If you know/have a good relationship with some of the below House of Representatives, try to get them on as well! We need anyone we can get 💙

This looks overwhelming, but if you need help, I would be happy to guide you! The best thing to do is find out who your Representative is and then look at their profile - try to "get to know them" a little bit through Social Media. If you need me - PM or call me! The below list are the ones that have NOT signed the Colorectal Cancer Caucus yet, it would be great if we could get a lot of people on this caucus as who hasn't been touched with cancer? The question will soon be, if we don't take hold of it now, who doesn't know someone that has been diagnosed and died of Colorectal Cancer 😢😭

Remember - Colorectal Cancer is the leading cause of cancer death for men under 50 and 2nd leading in women!

The below link is where you need to go in order to send your letter to your Congressmen/Congresswomen/House of Representative asking them to become a part of the Colorectal Cancer Caucus:

https://ujoin.co/campaigns/2413/actions/public?action_id=2657

Only In Virginia
Rep. Rob Wittman
Congresswoman Jen Kiggans
Congressman Bobby Scott
Congresswoman Jennifer McClellan
Congressman Bob Good
Congressman Ben Cline
Congresswoman Abigail Spanberger
Congressman Don Beyer
Congressman Morgan Griffith
Congresswoman Jennifer Wexton
Congressman Gerry Connolly

Virgin Islands
Congresswoman Stacey Plaskett

Only In Washington
Congresswoman Suzan DelBene
Representative Rick Larsen
Rep. Marie Gluesenkamp Perez
Rep. Dan Newhouse
Congresswoman Cathy McMorris Rodgers
Derek Kilmer
Congresswoman Pramila Jayapal
Congresswoman Kim Schrier
Rep. Adam Smith
Congresswoman Marilyn Strickland

Only In West Virginia
Congresswoman Carol Miller
Congressman Alex Mooney

Only In Wisconsin
Congressman Bryan Steil
Mark Pocan
Congressman Derrick Van Orden
Gwen S. Moore
Congressman Scott Fitzgerald
Congressman Glenn Grothman
Representative Tom Tiffany
Rep. Mike Gallagher

Only In Wyoming
Rep. Harriet Hageman

04/09/2024

Part #10
Since March 12th - we have had 13 more people sign - that is 13 more people in two weeks. If you know/have a good relationship with some of the below House of Representatives, try to get them on as well! We need anyone we can get 💙

This looks overwhelming, but if you need help, I would be happy to guide you! The best thing to do is find out who your Representative is and then look at their profile - try to "get to know them" a little bit through Social Media. If you need me - PM or call me! The below list are the ones that have NOT signed the Colorectal Cancer Caucus yet, it would be great if we could get a lot of people on this caucus as who hasn't been touched with cancer? The question will soon be, if we don't take hold of it now, who doesn't know someone that has been diagnosed and died of Colorectal Cancer 😢😭

Remember - Colorectal Cancer is the leading cause of cancer death for men under 50 and 2nd leading in women!

The below link is where you need to go in order to send your letter to your Congressmen/Congresswomen/House of Representative asking them to become a part of the Colorectal Cancer Caucus:

https://ujoin.co/campaigns/2413/actions/public?action_id=2657

Only In Texas
Congressman Nathaniel Moran
Congressman Dan Crenshaw
Congressman Keith Self
Rep Pat Fallon
Congressman Lance Gooden
Rep. Jake Ellzey
Congressman Morgan Luttrell
Rep. Al Green
Congressman August Pfluger
Kay Granger
Ronny Jackson
Congressman Randy Weber
Rep. Monica De La Cruz
Congresswoman Veronica Escobar
Pete Sessions
Congressman Jodey Arrington
Congressman Joaquin Castro
U.S. Representative Chip Roy Press Office
Congressman Troy Nehls
Congressman Tony Gonzales
Congresswoman Beth Van Duyne
Roger Williams
Michael Burgess
Congressman Michael Cloud
U.S. Congressman Henry Cuellar
Rep. Sylvia Garcia
Congresswoman Jasmine Crockett
U.S. Representative John Carter
Rep. Colin Allred
Congressman Marc Veasey
Congressman Vicente Gonzalez
Congressman Greg Casar
Rep. Brian Babin
Congressman Wesley Hunt

Only In Utah
Rep. Blake Moore
Rep. Celeste Maloy
Rep. John Curtis
Congressman Burgess Owens

Only In Vermont
Rep. Becca Balint

04/08/2024

Part #9

Since leaving D.C., the size of the Colorectal Caucus has DOUBLED from 14 to 29 members! If you know/have a good relationship with some of the below House of Representatives, try to get them on as well! We need anyone we can get 💙

This looks overwhelming, but if you need help, I would be happy to guide you! The best thing to do is find out who your Representative is and then look at their profile - try to "get to know them" a little bit through Social Media. If you need me - PM or call me! The below list are the ones that have NOT signed the Colorectal Cancer Caucus yet, it would be great if we could get a lot of people on this caucus as who hasn't been touched with cancer? The question will soon be, if we don't take hold of it now, who doesn't know someone that has been diagnosed and died of Colorectal Cancer 😢😭

Remember - Colorectal Cancer is the leading cause of cancer death for men under 50 and 2nd leading in women!

The below link is where you need to go in order to send your letter to your Congressmen/Congresswomen/House of Representative asking them to become a part of the Colorectal Cancer Caucus:

https://ujoin.co/campaigns/2413/actions/public?action_id=2657

Only In Oregon
Congresswoman Suzanne Bonamici
Congressman Cliff Bentz
Congressman Earl Blumenauer
Val Hoyle
Rep. Lori Chavez-DeRemer
Congresswoman Andrea Salinas

Only In Pennsylvania
Congressman Brian Fitzpatrick
Congressman Brendan Boyle
Rep. Dwight Evans
Rep. Madeleine Dean
Congresswoman Mary Gay Scanlon
U.S. Representative Chrissy Houlahan
Congresswoman Susan Wild
Congressman Matt Cartwright
Congressman Dan Meuser
Rep. Scott Perry
Congressman Lloyd Smucker
Rep. Summer Lee
Congressman John Joyce
Congressman Guy Reschenthaler
Glenn Thompson
Representative Mike Kelly
Congressman Chris Deluzio

Only in Puerto Rico
Rep. Jenniffer González-Colón

Only In Rhode Island
Representative Seth Magaziner

Only In South Carolina
Congresswoman Nancy Mace
Joe Wilson
Congressman Jeff Duncan
Rep. William Timmons
Rep. Ralph Norman
James E. Clyburn
Congressman Russell Fry

Only In South Dakota
Rep. Dusty Johnson

Only In Tennessee
Rep. Diana Harshbarger
Congressman Chuck Fleischmann
Scott DesJarlais
Congressman Andy Ogles
Congressman John Rose
Congressman David Kustoff
Congressman Steve Cohen