Oct 05 2021

Tuesday, Oct 5, 2021

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Just checking in to give an update. September 16th had to be skipped due to intense cold flu like symptoms. No Covid though, after getting tested. The treatment plan was just pushed a week. Even though a week was skipped the CA did go down. The numbers are down close to a normal level. Amen. Again! Thank you for everyone’s prayers!

At my Dr visit last week, I told the Dr that my hip was still hurting somewhat so it must still be cracked a little. My bone Dr. from another facility, had said it would not heal very quickly due to chemo. My cancer Dr said due to low blood count that yes, that was the case. So then a light bulb when off. When I was on the immunotherapy Ibrance for the cancer just being in my bones, that drug/pill is also a form of chemo. This is why my leg was not healing since the fracture in Sept 2020 and I have been limping round for that long.

I am having more energy than normal (even though on chemo) than in the beginning of this 12 round process. Doc said that since the cancer is shrunk my Liver it will give me more energy. So that is a relief. One of the worst things for the last 1.5 years is the fatigue.

My last chemo is in two days. My hair should start to grow back I would think in a couple weeks after that. Not really sure. I have wigs for the fall and winter if I look goofy in the in between time.

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Sep 15 2021

Wed – Sept 15, 2021

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Things have been moving along. This past week I got a severe cold and lost my voice yesterday and it is still not gone today. My right hip is still cracked based on the pain. Some days are worse than others. Hopefully after the chemo is over that will heal up better and be much less of an issue. The cancer antigen marker is again down since the last reports. One week it did go up slightly. My Doctor says these numbers are good to review but they are not always accurate and do not give a full picture. Not sure what is going to happen tomorrow with this cold – meaning what my blood work will look like or if they should or will give me the scheduled treatment. I have never logged a fever since fighting this bug in the last week plus. Below is my CA from last Thursday 9-9-21.

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Aug 20 2021

August 20, 2021 – CA Test

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Yesterday, was chemo #6 of 12. So we are at the halfway mark. Great News. For some reason my doctor included the Cancer Antigen test again, even though I had it last week. He has been doing these monthly. Even after one week, it is down again to 93.9. Amen! Thank you for all those prayers!

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Aug 14 2021

August 14, 2021 – Test Upate

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This week 8-12-21 my blood work was in the normal range for white and red blood count to get my normal dose of Paxol. That was the only drug for this week. Each month my Dr. has been checking something called “Cancer Antigen” in my blood work.

Here is the chart:

Cancer Antigen

Here are some comments about the numbers based on what was going on.

  1. Spring of 2020 had strange body aches on and off. Felt very off.
  2. Had CT/PET Scan beginning of June 2020
  3. Had Pelvis Bone Biopsy June 19, 2020 – positive for Breast cancer cells.
  4. Started Ibrance Pills and Fluvestrant Shots Beginning of August 2020.
  5. Only had 3 does of Shots due to side effects.
  6. Stayed on Ibrance and another estrogren blocker exemestane until about May 2021
  7. CT/PET were looking good
  8. In may 2021 Started feeling extremely fatigued and just yucky.
  9. Did another CT Scan and found Spread to Organs (Liver and Lung) from Bone.
  10. Started Drip Chemo in immunotherapy July 15, 2021.
  11. This last chemo started feeling better and side effects are less.
  12. On the Chart 5-13-20 is 60.3 and it is cut off.

So based on my current chemo my numbers have come down. The info came to my account yesterday. The Dr. told me it may not be in until late next week and he also said the numbers may shoot higher before showing a lower number. Well it is great the numbers are actually showing progress within 30 days.

So you can see the numbers and they match what was going on. The cancer mutated sometime in April or May of 2021 and was no longer being successfully treated by my Ibrance treatment.

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Aug 05 2021

August 5, 2021

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Today is treatment #4 of 12. I am here for the day. I have all my devices to work and keep me busy unless I am sleeping. So they had to reduce my chemo by 80% due to blood work. It was reduced by 50% last week for the same reason. I will be taking my immune therapies today (which I do every 3rd week). This takes the process longer as they have to slow drip them all separately.

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Aug 03 2021

No More Hair – Just a Buzz for Now

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I have been holding off getting my hair cut or shaved. When the day comes, you know it is time. Today was the day. I woke up and showered and hair was coming out in clumps. Due to me keeping it up in a hair clip during the summer months mostly due to the heat, I think that helped keep the hair on my head a little bit longer.

I went to a local hair place called Fashions-A-Head and they were amazing. I asked if the salon would donate my hair. I am looking forward to hearing how my donation has helped someone. Got to meet a new girl named, Emmy. She treated me like a queen and took great care of me and went above and beyond.

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Jul 29 2021

July 29, 2021

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Last time this year we hosted family for my daughter’s wedding. It was a great time. I had recently found out that I had cancer in my bones (pelvis and spine) and asked to start my pill and shot treatments after the wedding as I did not know what my response would be. Due to Covid we never ended up going on a trip for our 30th wedding anniversary of 7-28-20. It is ok though things could always be much worse. So yesterday was our 31st wedding anniversary. We just went to our local go to restaurant that is wonderful – Evolution Grille. They know us by name and customized dish! Did not want to go anywhere more than that since chemo #3 was today.

So today, at chemo, I conversed with some clients by text. The nurse took my blood and said my white count was low. It was low enough that they cut my chemo strength by a small amount. The nurse said if they did not, I may not be able to get my treatment next week and would have a delay. They also cut my steroids since I broke out with so much acne. Getting better but still looks back to me. When I brushed my hair this morning a big hunk came out. The soreness on the scalp was much better. Look out baldness is coming.

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Jul 27 2021

July 27, 2021

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I have done two rounds of chemo so far – July 15 and 22. I will have chemo every week for 12 weeks. After the first round, I was exhausted as of July 15th. I sept a lot over the couple days before the chemo started, mostly, I believe, due to the port being put in. July 15th there were three drugs administered, Taxol which is chemotherapy, Herceptin and Perjeta, which are an immunotherapy, I believe. The second and third weeks are just Taxol. I was not as tired the second week. I am hoping I wont be as tired this Thursday.

This past week I broke out in a rash all over my face. It was actually acne. The doctor thinks it is a reaction to the pre-medication steroids. So I used my topical antibiotic (per doc’s instructions) that I use for acne to reduce the reaction. It worked. The acne is worse than anything I had as a teenager and hurts.

My hair is starting to come out more in the last day or so. At some point, I will have to shave my head. Not really looking forward to that. The second time I lost my hair, I did donate it. So if I time it right and have enough hair left, I will consider doing that again. This is very traumatizing for me as it is for a lot of woman – to loose their hair. If I was a short hair person, it would not matter maybe so much. I know it is sure easier to take of little or no hair. LOL – I am sure you can agree with that.

Side effects that I am having are nausea, digestive issues, fatigue, nose bleeding, and some headaches. I am suppose to drink a lot of water. If I don’t it is partially due to me forgetting. Sometimes things don’t always taste so go, even water.

Below is a photo a week or so before chemo and July 11th after my port was put in.

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Jul 15 2021

July 15th, 2021

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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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Aug 17 2012

Amazing Story

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Here is a story someone sent me about a man who lost his hands in a fishing accident.  He could not afford to get prosthetic hands so he built his own.


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