It has been kind of a whirlwind week. Here are some bullet points from my current medical diary.
Last Wednesday, 12-7-22, I was to have my next round of immunotherapy/chemo. The doctor went over my last PET scan (from November 30) and did say they there are some spots in my liver again. Nothing like my liver was before and there are more spots in my bones. He decided that he may need to change me to another drug called Xeloda (which is a pill and may not make my hair fall out) and we are waiting still today for insurance approval. So I did not have any treatment last week.
Another reason for no treatment was my heart did not appear to be pumping or squeezing properly. This can happen from chemo treatments. So this past Friday, I had a video visit with a cardiologist. He said my last echocardiogram may have been either done wrong or read wrong. So tomorrow, 12-14-22, I will be going to have another one. This result will play into what drugs I will be on going forward.
My cancer numbers are up slightly that refer to the liver. My Alkaline phosphatase are up and the aligns with the spread in my bones.
My cancer Dr does want me to go see the breast cancer specialist at Magee Hospital downtown Pittsburgh. The next available appointment was March 2023 and then while the staff was on the phone with their office they had a cancellation and a slot opened up on Dec 27th. The breast cancer specialist was just at a Texas health meeting where cancer drug trials are discussed. So by seeing her, I may be able to find out about some other options.
When I had last visited the breast cancer specialist, it was suggested that I could go on a pill, that is an estrogen blocker called Tamoxifen. I was on it for a year after my first diagnosis and treatment in 2010. I did get the side effects of Uterine tumors and it was a bit painful. This drug also can cause cancer. I had told the BC specialist that I did not want to be on that pill again, one reason being it can cause cancer. She said “But you already have cancer”. I did not like that answer.
My cancer Dr and the BC Specialist have also suggested going back the the faslodex shots in my butt. I said “no way”. The side effects are crazy. My hip cracked, numbness and pain in my back side were just a few things. I believe I still have the numbness in areas and my last shot was September 2020.
I am still going to the wound center in Cranberry Twp, about Avery 7-10 days. The hole my my leg (below my right knee) is getting smaller. I have nerve pain that I believe is coming from the wound even though the wound is betting better. The nerve pain in my right light has been very bad and I have been seeing my Primary Care Dr about drugs to control it. There are times that I can barely walk and my leg feels like it will collapse. When I rest my leg and am on the pain pills, I look and feel fairly normal.
Last week, I harvested my first batch of broccoli sprouts. Recently, I stumbled upon information on sprouting. It is really great for your health and some sprouts are very anti-cancer. Sulphoraphane is a key nutrient in broccoli sprouts and highly anti-cancer for breast cancer. Research for yourself. It is so easy to grow sprouts too!
Last week I also got my first hair cut since I got my head shaved in July 2021. It feels good to have my hair growing back again (for now). I have always been a long hair person.
The strange thing with all these medical issues is that a few days before I was to have chemo again, I was feeling less fatigued and more energetic that I had felt all year. I could focus more than I had been able to all year and got things done that should have been done a while ago. Even just simple house tasks. There was really no reason for me to feel this way with the test results. I had not even started the sprouts yet.
Things are going in the right direction. I had a PET scan late September 2022. I finally went over the results early October at my next chemo session. The results showed that there is no detectible caner in my liver, AMEN! I think he Doctor was a little shocked. All the patients that he had on the drug I am currently on, had passed away (as of the time I started on this current drug). He did note that that does not mean there is actually no cancer in the liver but that it is not detectible. My Cancer Antigen numbers just hit the 97 mark. Normal is under 38. I was at around 2700 earlier this year (the highest ever for me).
I am feeling better but do get tired after chemo. My next chemo is Wed, 11-16-22. I recently had a heart test to make sure I can continue chemo. It is a rule for this drug that I have one ever six months and many chemo can effect the heart.
Late September I started having a lot of never pains and aching in my right leg. The one that has the hole in it and the knee replacement. I am on several pain killer’s to this day. Not sure why I have the nerve pain. It could be due to the doctors at the wound center digging around in it when they clean it out and/or from the chemo as it can cause nerve issues. The chemo Paxol from last summer also can cause nerve issues. Sometimes I have to use my cane. If I am having a good day then I won’t uses it. The pain varies from throbbing in different parts of the leg to sharp pain like being stabbed with a knife in several places or being stabbed with several needles. I hope I can get off the pain killer’s soon.
Last week I got back from visiting with my parents in Hilton Head at their time share. My mother had pain in her back for the week and at the end of the week she ended up at the ER. She was diagnosed with a mass/tumor on her kidney and metastases in her lungs. After she got home she had gone to the ER again, since the pain was so bad. They kept her in for more testing and did a biopsy on her lungs. She is to get the results back today after going over them with her oncologist. If you are praying for me, please add her to your list. Our family has a lot of unknowns as of today. Hopefully I will know more this evening.
It has been long time since posting. I have been having chemo every three weeks, since my last post. My cancer antigen numbers and others have gone down since then which is every encouraging. I treasure that people that are praying for me. Thank you so much! The prayers are being heard. In recent treatments, my doses have had to be reduced down 70% because my platelets are taking a hit. They were down to 47 this round but they opted to still treat me. If things keep going down, I may have to skip a week (which doc said would ok at some point or get a platelet transfusion).
Every so often I have a PET scan. My last one was in June 2022. My liver looked so amazingly better on the PET scan. I did have some additional METS slightly in my left hip and right shoulder. I am hoping that it got worse and now is getting better since my last PET was in Dec 2021. I will probably have another PET in September. If things would look super good, I may even be able to take a break just because or from being tired. That would be great !
Every Friday, I have been doing to the would center in Cranberry Twp, PA. My wound below my right knee is getting much better but it is slow going – partly due to being on chemo. Dr W is happy though. This past Friday 8-26-22, the area around my wound was red and hot – although the wound looked good. She then sent me to the ER in Fox Chapel, where most of my Doctors are. My infectious disease Dr came down to see me. He had just gotten off the phone with my bone oncologist at Shadyside Hospital. Dr W. is always so concerned to avoid in infection due to all the metal in my right leg due to the extended knee replacement. He does not want me to loose my leg. Dr J had me go right up to his office to get a dose of IV antibiotics right away after being discharged from the ER and having a bunch of tests. These were the same antibiotics I had in January and February this year after my muscle flap surgery. The redness went down the next day but my leg is still a bit hot. These IV antibiotics are suppose to be slow released over 2-4 weeks. With all this running around, I left the house at 8:20 am and got back at almost 5 pm while being at medical facilities all day and had no lunch.
I am grateful that I can still work. I do have to take short naps sometimes but that is good for everyone. My change in diet and supplements has really helped me deal with the side effects of the chemo. I will be doing my best to keep up with that. Below is my cancer antigen graph since February 2022 with the last reading for the CA being at 169. Normal is about 27-29. Last year after being on Paxol for three months – summer 2021, I was down to about 42. So these numbers are getting there. Hopefully the cancer does not mutate and the drugs can continue to work sucessfully or even better be totally cured!
Friday, February 18th I had some good and bad news from my Plastic Surgeons office regarding the wound/hole in my right leg. My wound look partly better and partly no change at all. The next step before another surgery was to try this special sealant the is made of what contact lenses are made of. They did not have any of this product in stock, as it is a special item, I had to go back Monday. Each week I have to go back and have it checked on and filled in. Today was the second Monday. Things looked dramatically better (Thank you God) it appears to be working. The PA redid the would packing today and hopefully it will be better next week. I have also increased my protein and vitamin D.
Between Prayers, medical care, and increased nutrients, things are going in the right direction.
Loosing your hair can be traumatic. I have always had along her so this is hard to deal with. (I really do know it is the least of my worries). Below is a photo from early October 2021 after I was done chemo. My hair did not actually fall completely out this third time but I would say 95%. The chemo I started on last week and will do one of three things, not fall out, thin or fall out (wow what other options would there be ?? LOL) I have avoided a haircut and mostly wear a hat out since I am not really sure what to do with the hair at this stage. If my hair might fall out, it will be in the next 2-3 weeks, I am guessing, as that has been what has happened in the past. So I will wait to get a trim and plug along.
So funny thing is my Drivers license expired in Dec 2021. With a lot of things going on my temp DL expired. I did not want to have a ball cap or a balled head on my DL for 4 more years. I was afraid they would make me take the had off if I wore it. So I put on the real hair wig. Only time I wore the wig this time for the 2021 Chemo treatment.
Thank you all for your prayers. Different friends and family are always encouraging me that there are people praying. I am so blessed for these prayers and I pray the Lord blesses you all who are praying for me and my family. I am aware of at least 5 churches praying. Thank you! – Amy
Last Friday, 2-10-22, I visited my cancer Dr and got my first dose of my new chemo, Enhertu. Most times, I see him before treatments to discuss new info and follow up. He did mention that this drug they are using is the best out there. There are other treatments but this is the best. It has only been out there for a couple of years and he has only used is a few times at that office. It was recommenced my my breast cancer specialist who is on my medical team. So far I have been tired but not as much as January when I when I had two doses of drip antibiotics. Another thing to note that I may have said in the past is that the cancer gets smart and then the current drug often stops working because the cancer has found a way around the drug and mutates.
Dr. L, has informed me that the estimated time I have left is a year. Dr.’s though don’t really always know, that is just the estimate. Once you are discovered with Metastatic Breast Cancer (MBC) then the industry wide out of all breast cancer types ends up being 3 years. Many patients survive many more years than that. I will be 2 years from discovery in June of 2022.
Also, went to my plastic surgeon/wound Dr in Cranberry on Friday 2-11-22, She said the surgery/muscle flap, to close the hole on my leg, is not working so well. Some of the skin is dying. I go back Friday for her to look at again, and then they will be giving me a special treatment that is not covered by insurance but are doing for free as the center can order so much supplies if needed for a select amount of people that the office manager choose to use it on. She said I was definitely someone who she is approving to use it on. Bless God. It is some kind of sealant that I will keep on my leg for several days to aid in healing. After that I will have to have another surgery. The concern is the healing process as I am on chemo now.
Here are my numbers. My cancer Dr was very concerned about my numbers going up so fast from Dec to Jan and now they more than doubled in 3 weeks of as Thursday.
Last week was a little crazy. I visited my plastic surgeon for the wound on my leg. She said it looked good. Then right after I went down the hall to get my bloodwork drawn. Dr L decided to do a re-check after a week because the numbers shot up so high and he was shocked. Here is the new graph from the the last draw for the Cancer Antigen.
Then numbers shot up even more from about 1030 to about 1200 in just 6 days. Then last Friday I had a CT scan. The automated report I read at 3:30 pm. After having the test at about 1:30 PM on Friday. The Dr did not get the report on Friday and was out Monday. I spoke to him on Tuesday. So I have three options
Go back on Paxol that did work but stopped working after I went off of it. It also highly likely kept my hip and sore on my leg from healing. I have numb hands and toes from the toxic damage. If I would go back on this the damage could be much worse and cause me not to be able to walk and who knows what else.
2. Go on this newer drug that the breast cancer specialist called for.
3. Dr L said or do nothing and forgo any treatment.
Right now we are proceeding with the drug recommended by the breast cancer specialist. I will start that on Feb 10th. I will no longer take the herceptin and perjetta. The new drug is also a drip. I forget what it is called.
I got a MUGA scan yesterday to check my heart. The results look the same as the one I had before I started chemo. This is to measure the heart for damage from chemo.
Today I went to the infectious disease Dr. I have had two antibiotic infusions to help me from loosing my leg. I was told it is a great medicine. I side effects have been horrible. GI problems, nausea, lack of appetite and severe fatigue. I don’t have to do that any more and will go on low dose antibiotics starting Feb 16th. Those will be doxycycline and amoxicllian twice a day for up to a year. I will continue to consult with them and they will let me know when I can stop those drugs.
Forgot to mention that I had my antibiotic drip treatment right before getting my cancer blocker therapy on Thursday. This is suppose to be my last one. The doctors are being aggressive, as my leg was infected and there is a lot of hardware in there. This will save my leg from possible amputation.
After the two instance of drip antibiotic, I will be starting doxycycline for up to a year.
it has been interesting since being home. Two medical people during my process came in contact with me and then three days later came down with covid. The same with one of my Christmas time guest. Fortunate to have not gotten anything.
I have had a number of appointments each week, between in home care for my wound and some mild therapy. My head was spinning. So this past week. I went to a Doctor that I dont see very often, the great cancer specialist in Magee, Dr P. She is one of the best in the country. She gets all the breast cancer trials first. She and my main cancer Dr have spoken about treatments during the last year and a half.
They have determined due to my testing that I have two types of cancer HER2- and HER2+. The drip treatments every three weeks help the negative and they have now given me a pill called Fermara (letrozole) which I am to take daily. The cancer that will be fighting is in my spine. If this fails to work then I will need to back on drip chemo (Taxol). Drip chemo takes care of both cancers but it is more toxic.
My last trements of Herceptin and Perjeta was on Thursday. Due to holiday and this last surgery, I did not have anything treatments since December 2, 2021. My Cancer Antigen has been blown off any chart of I have seen so far (of mine). It is up to 1037. In the past my main cancer Dr said he does have people with numbers this high that are doing well. So we will have to see what Dr L (my main cancer Dr) says on this. Will probably have another PET scan in about 3-4 months.
I was in the hospital for my plastic surgery on my leg from Dec 30-Jan 4th. Maybe the longest stay ever for me in a hospital. Due to the long stay and anesthesia, I have been sleeping a lot. Maybe even due to the cancer numbers going up.
Physical therapy is going slow, as I cannot bend my leg until my plastics surgeon approves. I see her on Jan 26th.
