Third PET Scan, Hanging in There...
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 month, the nurse did not realize that she was going through scar tissue and neither did I. The pain was a 10 the entire 8-10 minutes as it went in and I cried. At that point, I was going to try and get them to let me go back to infusions through my port. After another nurse explained that if they hit scar tissue, it's going to be extremely painful and that I am to tell them to stop and try another area, and that insurance doesn't like changes like that, I decided to try the injection again this month. (The time frame is actually every three weeks for the injection).
I got a wonderful nurse, and she could tell by feeling the muscle tissue in the thigh area, where to inject. It was pain free this time! I gave her a big hug.
In addition to Herceptin and Perjeta (for triple positive breast cancer like mine) I'm supposed to take an aromatase inhibitor which greatly reduces the estrogen levels in my body. Even at 75, your body is still producing estrogen and my invasive lobular carcinoma is estrogen fed. There are three possible choices out there: anastrozole, letrozole, and exemestane. Of the three and the very bad side effects that are common for many people, exemestane seemed the best choice for me. For three weeks, while I took the exemestane, I suffered bad nausea, severe leg cramps in the large leg muscles almost every night, reduced sense of taste and terrible muscle and joint pain. I was taking magnesium glycinate and vitamin B-6 to try and help with the leg cramps, but the benefits were minimal. I would sleep for two hours and then wake up with massive thigh cramps, or shin and toe cramps. I'd go back to sleep and in another hour or two, wake up again with a massive leg cramp. Even my left hand was cramping during the day. So the doctor said take a break from the meds. Within days, the leg cramps subsided. I still have them occasionally, along with attacks of diarrhea which are a side affect of the herceptin and perjeta. I never know when those are coming, they just happen.
The doctor said I've got to be on an aromatase inhibitor for the estrogen component. He wants me back on one of those three previously mentioned drugs. I decided to try the exemestane again. So far, one week in, I'm having trouble with the leg cramps again, but not as bad and trying to do stretches before bed. I also am being careful how I turn and move because if I move too fast in bed to change positions, the muscles grab. I can tell when the cramps are about to hit now, so I jump out of bed, and walk the floor for a bit till they subside. My family members have suggested mustard as that's what the football team keeps on the sidelines for players with leg cramps, but I about throw up if I try to eat some. Next up is pickle juice. I will try that before I go to bed at night.
Overall, the cancer is being stabilized, and the doctor feels that the regimen is working. I will continue to have scans every three months for nobody knows how long. What I thought was interesting, while visiting the doctor, is I mentioned in the last two previous PET scans, the radiologist closed with "no evidence of metastatic disease". This time the radiologist, a different one, did not say that. The doctor said, "You really can't say that. We don't know that for sure." So it's better that the radiologist did not close with that. Maybe for him, but not for me.
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| Oxbow County Park |
So next week I have an echocardiogram scheduled. Other than that, my blood work has been excellent for the last two checks and so that is a good thing. I'm plugging along, and I really do love working with the kids. I feel normal when I do that. The hair is growing very slowly and much more white, but I'm looking more like the gal I used to be. Wish my nails, eyelashes and eyebrows would catch up, but guess they take a lot longer.
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| A tree at Oxbow County Park, Goshen, IN |
It's a really beautiful fall here, in northwest IN, and I'm just grateful to be here and have the support of friends and family and people who still like to read my blogs! Thank you from the bottom of my heart. It really helps a lot to know you are out there.
So good to catch up with you now and then. I am looking in just like I know some are looking in on me. We are out there pulling for you. Keep on, keeping on!
ReplyDeleteKeeping push through. We were glad you were able to go out West. Those kind of trips will be valuable re-set times. Thinking of you
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Your update is appreciated. My Alice just finished chemo and had MRI so we await results before her surgery. She, like you, is so very tired. She goes out and walks also but somedays it is difficult. She is also a sub and has not missed one full day of school yet but has sick days stacked up in case she needs it during the next leg of her journey. I worry so very much. I do not understand all the terminology but know that some words (non metastatic ) are a good thing.. I wish you well and want you to know people out here are thinking and praying for you. Take good care.
ReplyDeleteI am so sorry to hear about the cramping! I know how horrible they can be and how helpless you must feel. I won't go into my own experience with them, but I will tell you I have fought for relief for years trying every remedy and many doctors. I want to suggest trying a Topical application with as high a percentage of Menthol as you can find. Good old Ben Gay was one, and I often use the Walmart equlivent "Pain Cream." Another one is BIOFREEZE, 10% Menthol. It does help a lot, and the cream is easy to apply and control where you are putting it. I also found a Spray on Amazon called "Stop Pain" it can give relief in just a few minutes. I use it on my feet and lower legs. (Beware of using it anywhere near your "private places" It can burn! It has 8% Menthol. I hope this advice helps some. It can take a little while to work, but at least you don't have to drink or eat it. All my Love and best thoughts are for you.
ReplyDeleteMore about cramping and Menthol. I first tried it for my own battle with cramping when I picked up a spray bottle of something called "Red Feather Pain Spray" in a Newfoundland gas station. It was touted as a secret Indian remedy for pain relief. I was desparate for relief at the time and was willing to try anything. I was amazed it actually helped and when I found it was not available in the USA I looked at the ingredients and discovered it was a Menthol spray. Similiar products have been in my arsenal ever since. It is not a cure, but a bit of relief. After many years of suffering, I have finally come to understand the cause of my own severe pain. High Blood sugar! When my sugars are under control, my cramping is far less. For you it is a reaction to a medication. But if these simple products can give you a little comfort, it is worth a try.
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