Breast Cancer Journey

  At last report, I was having trouble with bad leg cramps in the large leg muscles, not just calf cramps, but inner thigh cramps, which were the worst, because there really isn't a stretch that will make those go away quickly, like the "shove your toes upwards" to release a calf cramp. I was having major leg cramps almost every night for a couple of weeks. The doctor thought it might be the Exemestane, the hormone blocker, and he was ok with me going off of it for awhile. I went off it for two weeks. Slight improvement. Since the aromatase inhibitor (Exemestane) blocks estrogen and my type of breast cancer, (invasive lobular carcinoma stage 4, ER positive, PR negative, HER2 positive ) feeds on estrogen, I didn't like the idea of only a two pronged approach (herceptin and perjeta), missing the important third component-the estrogen blocker. Back on it I went. I did some more research about diet and supplementing with magnesium. I switched my magnesium supplement to a ...

  I had my third PET two weeks ago....I was worried about a spot on my collarbone that was growing, and so was my oncologist. The results were that the spot has shrunk a little bit! But there is an area of activity in the breast that has the cancer, that is showing activity. So they will continue to watch any spots of activity by continuing a PET scan every three months, indefinitely. I worry about what the radioactivity is doing to my body, it doesn't stay in there very long at all, but it can't be good, having this many in such a short period of time? What does my meds regimen look like?  I switched from herceptin and perjeta infusions which took hours to administer, to an injection that combines those two meds and it is called Phesgo. It is a slowly administered injection in the upper thigh, and it burns like heck when it goes in. If the nurse is careful, and does not hit any scar tissue from previous injections alternating in each leg, the pain is very minimal. Last m...

My latest bloodwork came back with VERY negative kidney results. Without going into a bunch of numbers, my kidneys were showing distress. I knew that I have not been drinking enough water and that dehydration could be the culprit, but they were scary numbers. After seeing the oncologist, he said, because of the way the numbers related to each other, or the pairing of numbers on the kidney functions test, that he was 99% certain that I was dehydrated. He said the numbers were high, but he was not worried. This was a brand new development, my kidneys had not shown any problems previously in all my bloodwork, which is done every three weeks. I'm terrible about drinking water or getting fluids. I probably was drinking less than 24 ounces a day, and that was through the summer. I've been getting leg cramps more lately, and that is an indicator as well. So-o-o-o...get that water bottle going, Sparky, and you should have better numbers next visit. He also told me to drink 5 little bot...

If it's one thing I am learning over and over again, it's that in this cancer journey, there are going to be highs and lows continually.  I had my first PET scan since ending chemo three months ago. I will be having PET scans every three months for quite some time, maybe indefinitely. If there is no new activity, then the PET scans will stretch out a bit more to every 6 months. Unfortunately, it wasn't the best news but it's good news. No tumors are actively present in the breast area or armpit nodes, BUT the cancer has grown a little bit in the clavicle area. This is NOT a new area but an existing one that showed up when I was diagnosed. The doctors are not too worried right now, but I am. I am still losing weight and not trying to do that. The final statement on the PET scan report says, "No evidence of metastatic disease" but I want to shout-"HEY! THERE'S A SPOT GROWING!" What are we going to do about that one? At this point, I do not know.......

Today is a big day in my life as a cancer patient. My oncologist wanted me to have a specialty breast oncology surgeon look at my case. Because of my robust response to chemo, and the lymph node improvements, he wanted a specialist surgeon, not just a regular breast surgeon to look at my scans and results. He suggested a surgeon at the University of Chicago, rated in the top 12 of cancer care centers in the US. I asked why I couldn't just go with the breast care surgeon here locally, as I really liked her, she has excellent credentials. He basically said the difference in training and background was critical. All righty then...off to the Crown Point University of Chicago location for a consult with Dr. Betty Fan. The Crown Point location hospital is a small one, with 8 beds in the receiving patients for surgery, and 8 beds in the emergency room portion. It's only been open for one year. It's a beautiful facility and right off the interstate. With my initial lymph node invol...

April 8, 2025....I went into my normal chemo infusion appointment not knowing if I would be having chemo or not...wasn't sure if I should start my steroid 3 day regimentation as the decision for continued chemo had not been finalized yet, so I did start, just to be on the safe side.   It's good that I did, because there was some confusion on the treatment plan on my part. I didn't realize that the PET scan was done early per doctor's request. Normally, it's done after the sixth chemo treatment. Initially, back in December that was the plan. During the first couple of chemo treatments, the plan was modified to a PET scan after four cycles, partly due to the number of all the different side effects that I was experiencing, and because the doctor wanted to know how I was responding to treatment sooner rather than later.  Disappointed to find out that the doctor was off on the day of my infusion appointment and in my mind, the turning point to determine any more chemo t...