Amy's Cancer Story

Thank you for your calls, emails, and texts. Those things make a girl feel loved (as well as many other things). Also please keep in mind that I am admitted to St Margaret’s Hospital in Aspinwall/Pittsburgh. I am on some drugs that make me dizzy, cause me to think crazy and produce typos when writing. Below is a summary of some things of recent past and from the last two weeks.

I have been on a wound vac since my surgery for the wound below my right knee in the front, in early February 2023. The wound vac is helping immensely. Although still not healed yet. I have been dealing with the wound situation since May 1, 2021 and the the return of breast cancer since June of 2020. The breast cancer is now Metastatic Breast Cancer (MBC) and is terminal.

I have several doctors here st St M, and my bone oncologist is at Shadyside in Pittsburgh. A couple of weeks ago, I went to my PCP, Mr Monahan at St M. My right leg, that has all the problems, was considerably larger than the left leg. He sent me over to the hospital for a doppler (ultrasound) – STAT. It was determined that there was no blood clot. Nothing further was done. I had a scheduled appt for Dr Jacobs (infectious disease). Dr J gave me my monthly Antibiotic Treatment Via my IV port. This is a regular treatment right now in attempt to save my leg. My leg has infection in it. If the metal gets infected than there is not much the Dr’s can do. Since I am on Chemo and infusion therapy for my breast cancer things challenging.

Yesterday, 5-10-23, decided to ask to be seen at Dr Jacob’s office. Dr Wang had highly recommended that I go and get my treatment early at 3 weeks instead of 4. After the discussion with Dr. J, and my other physicians, it was decided that In should be admitted over at the hospital ASAP with a bed being available. My chemo/infusion with Dr Lech was cancelled.

Yesterday evening an emergency team was called in to take care of the large lump on my leg. I was awake for the whole thing. The head Dr of the Team took out about 15 CC’s of fluid and Inserted a JP drain. The drain appears to be draining well.

Very early this morning (5-11-23, about 1:45 am) the nurse came in to check my vitals. She said my heart rate went over the limit. The nurse had to call in the floor team that deals with those type of emergencies. I felt totally fine. The staff could not figure out what was going on. It was a strange situation laying there with all these people I did not know, and feeling fine. My leg has been so swollen that I could not bend it to drive and if I tried my leg hurt very bad. I did not know what was causing this issue.

My blood counts have been very low since my last surgery in February 2023. I have not been on the chemo pills called Xeloda (brand name) since a week before that surgery. My last PET scan (4-12-23) scan revealed that the Liver METS were greatly reduced but the Bone METS were up. During February/March 2023 I was given Neulasta shocks to boost my blood count. That did not work.

Since being in the hospital since yesterday morning, my blood counts are still very low. I have been given blood and blood products. More blood was taken today and one of the counts is still low. As I write this, the nurse is giving me antibiotics via my IV/chemo port. Then I am going to get more blood after.

As of this morning at 8 am, I was to be transferred to Shadyside. Some of the paper work was not done on time and/or properly. I am still at St M.

My bone Dr needs to take a look at this wound ( as he has had the same thing in his life ). So he and his team has to review what is going on.

Since there is a lot going on, I will try and update more as soon as I can. I am hoping that will include me leaving the hospital. My husband and his Mom, have been doing a great job doing things that need done at home, I am very independent, so it is hard to ask for help.

My eyes are rolling back into my head here at 9:15 pm Please excuse the any typos,

Love you all!

Lots of things going on:

1. My bloodwork counts for various items in my blood have been very low. I received my antibiotic treatment on March 23, 2023. The infectious disease doctor was making it clear that they would keep treating me to prevent removal of my right leg (they dr.s are trying to keep my leg until I pass away) Various treatments and pills that I take effect the blood counts.

2. My leg has had great pain in it around the wound/surgical area. I started taking another dose of pain meds about 3 am in the morning. That has helped the morning pain not be so bad. I have also started taking Cymbalta, another drug that helps with pain. That seemed to help with the pain when going to bed. Took the first one last night. Activity seems to push me over the edge such as standing and walking. I hope and pray that this passes on to a pain free stage. I seem to have a little less pain today. I hope this continues. If not the next stage is morphine and that would mean no driving.

3. Discovered last night that some lymph nodes at the top of my right leg are swollen. Never noticed when it appeared. My cancer Dr said it should show up on the PET scan. He was not worried about it since it was on the same leg that is draining. If it would get bigger, I need to. Let him know.

4. I am at Chemo/Immunotherapy Infusion now, they told me that due to my counts being so low, they want me to have a hemoglobin transfusion. I have to get my blood type confirmed next Monday and have the transfusion early Wednesday. My platelets are low too but they are not low enough to give me a transfusion for the platelets. If I have shortness of breath or dizziness, they want to know right away as this would mean I need a rush on the transfusion.

5. I am going to be scheduled for a PET scan so that it is done before my next appointment with my cancer Dr 3 weeks from today. Also before I leave today, they are going to give me a Neulasta shot to boost some items in my blood count. I had one last month or so. I used to get these shots back in my bone cancer days too.

6. My dad fell off his bike with riding with a friend in his neighborhood yesterday. He had to be taken by ambulance due to his tibia being broken. He had surgery last night and seems to be doing good. My sister is able to fly in from CA to SC as she can work at home. I am frustrated that I cannot drive down and help my father. I have to stay for various reason’s one being that I have the wound vac attached and it needs to be changed 3 times a weeks or be removed so I can travel. When I went to my mother’s funeral last month, that is what was done and my wound got worse.

I am drained. That is all for now.

A lot has happened since my last post.

1. My mother was struggling with her kidney cancer and she lost her battle on February 19, 2023
2. All my side of the family made it to South Carolina for the funeral and to be my Dad. Even though circumstances were not the best, it was a great reunion of family and life celebration of my mother. Then most of us traveled by plane and car to Valley Forge Memorial Gardens in King of Prussia, PA to the burial site.
3. I was able to have my wound vac removed removed so that I could go on this trip. It is hard to go anywhere otherwise with it needing to be changed every 2-3 days and we had embarked on a 6 day trip.
4. The wound vac is doing a great job. I have learned that along with pulling the drainage out, the wound vac pulls the blood out of the wound and this helps heal it. So that is very encouraging that this whole ordeal is moving in the right direction.
5. My white blood count is still low and I have not returned to taking the Xeloda ( a chemo pill) – as of yet. I am still taking the $23,000 a bottle immunotherapy pill and getting an immunotherapy infusion.
6. This week was rough week. I saw 3 Dr’s. Had three home nurse visit’s and immunotherapy infusion. I was more tired than usual. Dr. Wiess (my bone oncologist) and he thought everything looked great from the surgery.
7. The pain was bad this week too. Today was one of the worst Sunday’s I have had. Quite often, in the morning it takes 1.5-2 hours for my pain meds to kick in. I have to eat first or I will throw up. I did not want my pain to keep me from attending church. I have to learn to manage my pain pills better I suppose. Once the meds kick in, my leg can feel almost normal but that does not always last too long. Then I tend to do to much activity and I am hurting the next day. Please pray for me, this has been a constant battle.
8. My pain is now mostly in the surgical area. Prior to surgery it was all through my leg. So in some cases that is an improvement for pain – now let’s be positive! I think part of the pain now is bone pain. The surgeons scraped my bone hard to make sure it bled. Bleeding is a good thing as it means the bone is alive. The pain is there at the wound and in the area where the drainage was happening – mainly.

Thank you for all the people from my church, friends and family, and other churches that have been praying for me and checking in. I appreciate you all!

1. My surgery was finally done on February 8, 2023 about 12 noon.
2. I was able to work at the hospital and keep up with my real estate clients.
3. The surgeons went in and cleaned out the wound. A drainage area was found. My bone surgeon put the antibiotic cement into the hole in my tibia.
4. The cultures came back by Saturday and my infectious disease doctor was able to know how to target the bacteria that was found in the wound and surrounding area.
5. I was not able to leave the hospital until Saturday due to insurance issues. I had to leave with a portable home wound vac. Kind of interesting as they said it was ordered before the surgery was done. Initially, I was suppose to go home the next day after the surgery.
6. I could not get my special antibiotic infusion at the hospital because the insurance would not pay for it if it was done at the hospital. I had to be discharged and then go back to the Infectious disease Dr’s office for the treatment. That happened the next morning, Sunday at 10 am.
7. At 12 noon the home care nurse came and put the portable home wound vac on.
8. The wound care nurse will be visiting 3 times per week to change the wound dressing. I will be using this vac for the next 6 weeks.
9. I was finally able to get a real shower at home, what a relief.
10. My white blood cell count is down and has been down for a while. This is most likely due to one of the chemo pills that I am on, so that has been put on hold.
11. I have my Herceptin infusion on Wednesday. This is every 3 weeks unless it has to be delayed. I will get an update on Wednesday when they do my bloodwork.
12. Here is a line to my plastic surgeon’s info. What a great lady.

I did not end up having my surgery yesterday and left the hospital at about 8 pm (got to the hospital to prep about 2 pm). My surgery was scheduled to be squeezed in at the end of the day about 4 pm. There were no OR’s available at that time. After 7 pm, this hospital goes down to one available OR. We waited and waited and so did the doctors. The last info they got from the surgery taking up the OR was there was no end in sight. I feel bad for whomever was in there. My doctors did not want to be even more tired and beat up from fatigue and we agreed. They found a slot for me around lunch time on Wednesday 2-8-23. I will get a call with a time today. Who would have thought that would have ever happened.

Heading in shortly to the hospital as my two doctors, my wound Dr and my bone oncologist Dr. They decided Friday that Monday (today) would be the day to get a surgery done. My bone oncologist is going to remove some dead bone and put in antibiotic cement. Last year when they went in they thought there was dead bone and it ended up not being the case. That would be great this time too. We will have to see.

I have been blessed with a great church body that has offered prayers and help beyond what I ever thought I would receive. I pray that God blesses all of you and the people also from others churches. It is great to know you all.

Here are some articles about my bone oncologist if you would want to read:

UPMC’s Dr. Kurt Weiss received grant for research on cancer he’s experienced

UPMC doctor, cancer survivor and scientist awarded with $100,000 grant to fight bone cancer

Grantee Spotlight: Kurt Richard Weiss, M.D. – From Osteosarcoma Survivor to Osteosarcoma Researcher

WINNERS: Dr. Kurt Weiss, Dr. Hussein Tawbi, UPMC

Prostate cancer treatment helps sustain 10-year-old with rare bone cancer (mentioned in article)

Friday my bone oncologist, Dr W, wanted to see me. So I was able to get an appointment for this morning. He thinks my wound is definitely infected. Although there is no confirmation from cultures or appearance, just leaking. He did not indicate that I needed to see my infectious disease Dr. Dr. W is doing everything he can to not have to amputate my leg. As long as I am still living, he wants me to have my own two legs as long as possible. He scheduled a surgery with Dr W, my wound Dr. He plans on cementing the top of my tibia to give me more time. It will be an antibiotic cement. I will be in the hospital at least a couple of days, but who really knows. He proceed to talk with his PA in the room showing her my x-rays and states that he has no idea how the heck my femur is holding together with the two wires and the bone grafts still. That comment could be good and bad. I guess Dr Goodman (who Dr W replaced after retirement) must have done a great job on the repair but nothing lasts forever.

On the way home, I did feel the need to call infectious disease Dr. They were kind enough to squeeze me in at another hospital that was on the way home. He, Dr J, got on the phone with my bone and wound Dr and had a big discussion while I waited. They are going to test me for pathogens during the surgery and do what they need to do. The infectious disease Dr wants to me stop my chronic doxycycline that I am on 2 weeks prior to surgery to get the best result for cultures testing as possible. I would not have known that if I did not stop in.

Tomorrow is my infusion for Herceptin and a visit with Dr. L, my oncologist. I finally got my second cancer pills late Friday but thought I should talk with Dr L before taking. So they are going to do blood work tomorrow to see if it is ok to start them. My platelets and white and red blood counts have been low. This week will make 4 Dr appointments unless any others get added.

My new cancer drug is still not approved and in my hands due to red tape. I was able to most likely get it for nothing or as low as $5 (hmmm because I asked). It was suggested that I start taking it as of Dec 27th.

Went to the wound care center Jan 6 and was having a great deal of pain walking. The Dr recommended that I go to the integrative medicine center in Pittsburgh at Shadyside. They have non drug options one being acupuncture. It is going to take me two weeks just to see the PA for them to evaluate me and then schedule me for the appropriate Dr. 

Went back to the wound care center on January 10th. My wound has increased drainage. It has been so bad that it leaks through my jeans almost everyday. They ordered me new bandage supplies when I was there but those are still not in my hands. Finally they are mailing out today and I will have a few days from now. Wow 10 days.

Since my leg has been leaking so bad, they also ordered and MRI. I cannot have MRI’s due to all the metal hardware in my leg, so that was changed to a CT scan. I had that done today. The soonest they could get me in at any facility near me in the Pittsburgh area in my health system. They found no pockets of drainage which was great. They did find a 6 cm fracture in my tibia below my knee. The PA at the wound care center and my PCP contacted me all within the hour of returning home and one thing that was said was all the pain in my right leg could be highly likely coming from this fracture. Wow.

This fracture may have been there a while but when I have CT and PET scans, my lower leg is never involved. That would explain why it was not found yet. This time it was because they were looking for drainage issues in my right leg.

Part of the CT report said this: “Extensive periosteal new bone formation is noted about the fractureplane and surrounding the stem of the tibial component.” So this could be a fracture that has been healing. 

In the last 3-4 days my pain has lessened. No idea why. Tomorrow on to the Integrative Medicine Center and Friday back to the wound center.

Prayers are working. But I still have to go through Drama. We all do in one form or another.

This was a quiet holiday. My mom stayed home for Christmas as she is in a very similar battle as I am. We were thinking of visiting her out of state but I had to stay home due to Dr appts.

I visited my Breast Cancer Specialist in Pittsburgh on Dec 27th. She has recommended that in addition to the Xeloda pill that I have been prescribed by my regular main oncologist to add two other drugs. One being the Herceptin that I have been on most of 2022 but to take without the chemo molecule via infusion through my port, then another pill called TUKYSA® (tucatinib).

I went to my wound Dr on Friday, Dec 30th. My wound has been doing fairly well and closing up. It has been a long road. Part of the wound appeared to have a bubbled flap over it so the Dr had to cut it back to prevent infection and she cauterized it. The wound had been leaking pretty back for 7-10 days or so due to the flap and was leaking through to my jeans. It is still doing it as of today.

Wednesday, 1-4-23, I will see my cancer doctor to go over the new treatment plan and probably get blood work. So interestingly, after waiting two weeks for all the proper paperwork and shipment of the Xeloda pills to my home, I was able to start them on Dec 24th. The side possible effects for the first week, round one, did not seem noticeable.

As you go though the drug process, you learn a lot of things. All of my infusions and chemo have always been 100% covered by what ever insurance I have been on over the years. The Ibrance pills I was on in 2020 were also fully covered. What a blessing. The Xeloda, which has a generic was covered with a $120 copay (monthly). I had to be on two different dose pills so that became $240. The drug foundations ran out of money as it was the end of the year and that is a source of help no matter your income. There are other sources as well, some being income based.

I did not have time to research before getting these pills in my hands. It had been over two weeks and it was the holidays. So I just paid it. The financial department at my cancer office also told me about a local pharmacy called Blueberry Pharmacy. This pharmacy carries generic drugs. The prices are lower than my copay’s. This can be helpful for people even if they don’t have cancer. I think my one out of pocket is going to be about $25 instead of $120 via my insurance. This is amazing!!!! This is not income based. It is just his prices. He serves Ohio and PA and ships!!!

My concern is that the TUKYSA® (tucatinib) (retails – $18,000 to $24,000 per monthly supply) is not going to be able to be obtained from the Blueberry Pharmacy as it is newer and does not have a generic. I am curious how long it is going to take me to find out what my out of pocket is going to be on this. I am going to research this as soon as I can talk to my doctor on Wednesday. The foundation money should be filled up too as it is the beginning of the year. My mother is on a pill and her insurance copay for the drug is $3200.

Things are still a bit of a whirlwind. It has been hard to keep up with Christmas things. This year, I did not use 99% of my decor. The tree is pre-lit and pops together, no decor on the three. How easy is that and it looks good. My leg hurts a lot so decorating (via standing for too long) would put me over the edge.

I am going to do bullet points again since it is a little easier to read.

1) I went to get my echo cardiogram last Wednesday at Shadyside Hospital. My heart doctor was in reading and read it right on the spot. Everyone was so nice. They were having trouble reading it still but gave me dye and all looked great. I am in good shape. The chemo did not appear to mess with my heart as of yet. So nice to have the test read right on the spot.

2) Went to the wound center this past Friday, things were looking good on the wound and the Dr and PA put more Ultrazeal in the wound.

3) I had asked for prayer with oil at church on Sunday and was blessed with a great crew praying over me, my family and the health issues that challenge me. The leaders committed to seeing us through.

4) I went to my Leg Dr (orthopedic oncologist) at Shadyside for a check in. They x-rayed my right leg and hip to see how it was doing. Based on my leg pain the Dr thought things would be a lot worse in there but they looked virtually the same as my last X-ray. My bone graphs are still failing but holding.

5) My mom-in-law who lives with us has been taking good care of us for dinner’s. There are many times that I am just plain exhausted by the end of the day. She always cooks a great meal and is more than willing to help out. She even helps with the chickens.

6) This afternoon, I go back to the wound center. The wound is more closed up than it has been. Maybe sometime I will be able to swim again, use a hot tub and not have to wear a plastic sleeve on my right leg while I shower – but things could be much worse.

7) The sprouts are going great. I started red clover this week.

Thank you for all your prayers!