Jul 15 2021

July 15th, 2021

Published by at 1:33 pm under Uncategorized

Brief Summary since 2012

It has been a while since posting. There have been 3-4 leg surgeries since last writing. This will be an on going saga that was due to being diagnosed with Osteoscaroma in my right distal femur in 2005 at age 35.

2013 was crazy, I had been doing some light exercise and the rod in my leg got fatigued (medal fatigue the Dr said) and bent and Broke! My foot was flopping around. The Dr did a good fix on that one.

2015?, was one where I slipped and fell on wet leaves in my back yard. I was not able to balance with my bad leg and it forced me to slip and bend the leg. My leg does not bend all the way due to the knee replacement. I ripped muscles and my knee cap was shattered. My leg bent all the way and my foot hit my but as I went down. I was lucky I did not hit my head on the stone wall by my patio where I fell. A long story short but my doc patched it all up and that included using kevlar to keep the knee cap in tact.

The last one was in Spring of 2018, where things looked bad on the X-ray and the Doc said he needed to go in and clean things up. When he got in there things were worse than he thought and had to add a some cadaver bone from the freezer to try to graph the bone. This has only about a 33 % chance of working and integrating with the current bone. It is not working as of today. I will need a repair. Next step is a full hip replacement and he said last week, at my check up that I wont walk as well, but at least I will have a leg.

So now back to the current cancer situation

In Feb 2020, my husband and I had bad colds. Mine seemed a bit worse than his. I actually had to sit up 3 different nights in a recliner to breath. I cannot ever remember having to do this in my life. It lasted, three weeks and then I was fatigued another month. I would experience horrible body aches off and on. Some were so bad, I could barely roll over in bed at night. It was so strange.

In March 2020, when the Covid lockdown hit the US. ( Looking back a few months later, after hearing various peoples symptoms, it makes you wonder what we had.) So by May, after it was easier to get to the Dr office, I went. My Primary care Dr (PCP) did blood work. I suggested that maybe I had Lymes. He gave me doxycycline while we waited for the testing to come back. That test ended up coming up negative, but miraculously all the body aches ended after starting the Doxy. Super Strange. My PCP Told me Doxcycline does reduce inflammation.

That same week, I was going to visit my breast cancer Dr for my one year breast cancer check up. Which was about ten years from stopping chemo. For 10 years I had been on immune therapy pills (arimadex and or exemestane) to help reduce the chances of breast cancer returning. My oncologist said I could stop taking it since the 10 years were completed. Since I was having strange pains, he said with your history lets do a CT scan. So one was done and there were some strange spots on my spine and pelvis. So my bone oncologist doctor (who was notified) for my leg agreed that I should have a biopsy of the pelvis. That was done on June 19, 2020.

During the biopsy of my pelvis (they drilled 4 samples in a CT guided test – while awake! But drugged). This came up positive for the same breast cancer cells from 2010. Often cancers and breast cancers that return will go to the bone and start in the spine and pelvis and spread through the bones and then onto organs. My main oncologist recommended seeing a breast cancer specialist. This woman is one of the best in the country and gets many trials when they come out – FIRST! She practices, lucky me (and other breast cancer patients) in Pittsburgh! We did see her and she had great things to say about treatments. The specialist said many treatments can stop working. One main reason is the cancer gets smart and go around the drugs, so you have to change to another treatment plan often times.

I was able to suggest to my Dr that I start treatment in August due to a family Wedding at the end of July. My treatment was Ibrance, which is immunotherapy pills. On 3 weeks and off a week depending on recover of blood work. There was a second drug included which was Faslodex shots in the butt. Two huge ones every month. Doubling up the first month every two weeks. Unfortunately these were a disaster for me. The shots cause numbness on the infection area and down my thighs and sever pain from the needles. My muscles ached horribly and my hip cracked by just turning in the kitchen. I kept telling my Doctors that my hip popped out. I could barely walk for months after. I only had 3 rounds of the shots and they took me off. This was not a common response to the shots. In place of the shots, they put me back on the drug I was on for 10 years as an estrogen blocker to aid the Ibrance as a combination.

My Dr. suggested due to my condition, I should definitely have the Covid vaccine that came out in 2021 or I would be in really bad shape if I got Covid. I also wanted to visit family and highly suggest getting the shot for flying in a plane. Honestly not sure what I think about all of that, but that is another story that is unfolding over time.

I had a PET scan 3-9-21 (includes radio active dye) and they found the cancer had appeared to be reduced which was great. Except for a spot on my lung. Due to the Covid shot there was a lot of inflammation around the arm. They thought the spot on the lung may be there due to that but would do a follow up scan in 3 months.

I was having strange symptoms in May 2021 and they decided to do a brain CT and my follow up a little early. The brain was clear But . . . The CT showed the spot on the lung increased in size and there were spots on the liver. This was very concerning. When it spreads beyond bones, into the organs, this is not good at all to say the least.

I was scheduled for a liver biopsy to see if the spots were actually cancer. After the results, my Oncologist was bouncing off the walls. He was so Excited! My breast cancer cell type changed from ER Positive / HER2 Negative to ER Positive to HER2 Positive. This is very rare! Less than 5% of patients have this change happen.

So being HER2 negative, there was only one drug for me and the life expectancy would be less than 2 years from now. The drug was called Xeloda. It was a pill form of immunotherapy. I am guessing it was just be extending my life and holding off the spread as much as it can.

The change to HER2 positive, while even more aggressive in nature but has very good targeted drugs. They are so targeted, they actually can get the cancer so cells small that it is non detective in the liver, lungs, and bones. This is an amazing blessing.

7-15-21 B – Morning

On Monday, 7-12-21 Headed to another hospital in my health system to get my 3rd port put in since 2005. Testing in many facilities is still backed up due to Covid. It went pretty well. The crazy thing, is when I got my port put in in 2005, the pain was so bad I was on Percocet and or Vicodin. There was a good amount of pain too on 2010 when the port was put back in. For this weeks port placement, It is a miracle that I have only had to take a couple Tylenol for the port pain. I have been sleeping the last couple days due to fatigue after the port. I have had extreme random Lower extremely pain. Especially after the first two nights. The Dr gave me some prescription pain killer and that helped take the pain away and I slept better the third night. The night before starting my chemo.

7-15-2021 – C – Noonish

Started chemo this morning and doing great so far considering sever fatigue. I will be on Taxol and a couple of other drugs. It is over whelming to repeat the treatment plan. So I may save that for a different time. To explain.

I am currently on pre-meds for the taxol. One is Benedryl. The funny thing is that last time I was on Benedryl in 2010 and was talking to a neighboring patient in my cubicle that had Breast Cancer. I started slurring my words and my husband took the computer away so I would not say anything stupid in email to my clients. They ended up reducing the dose. They have to start with the top dose today they said. There is no one in my cubicle with me today.

During past chemo treatments I have meat a lot of great people. Some were going to have a great chance of making it and some were not. Some patients were there for maintenance. When you would sit there, it was like “And what are you here for?” You would learn so much.

The Girl I mention was named Sue, and she was near my age too. We talked and got on FB in case we did not have chemo again on the same day same cube. Her pelvis broke and she had breast cancer that had moved to her bones and organs. I did later check and found out she had passed away with in three years due to liver failure.

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