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Jun 8, 2018 03:00PM
Inthegray, I'm also Oncotype 21, but at age 42 (just turned end of May, so 41 when I started), for me the study confirmed benefits.
Kate, thank you for being the beacon of hope from the future! I am glad your radiation is going smoothly and glad to hear your fatigue seems to be fading.
I'm now halfway through my treatments, and I will say the response has not been exactly the same each time (which is annoying to a planner like myself). The first three rounds I had an energy boost from the steroids that lasted about 24 hours, the fourth round I did not. I am more tired in the evenings for more days than early on, but on the plus side I feel like the beginning 3-5 days are harder and then I feel more like myself for the rest of the time, just crashing on the couch earlier in the evenings and sleeping longer overall. Overall, more energy than round 1 for most of a day, less and less energy for the evenings/nights.
Consistently annoying is the susceptibility to germs. I am fanatic about hand washing but still picking up all sorts of colds etc. My kids have one day of sneezing and it turns into a week long cold for me, or like this morning when I work up with conjunctivitis in both eyes! These are hassles and irritations, not serious. I did unfortunately catch a GI bug from them them after my second infusion that turned into two days and a night in the cancer center thanks to horrific diarrhea. This seems avoidable for most, however!
Exercise: I was a pretty consistent exerciser before cancer and I feel highly motivated to get back to it to try to put all the body changes behind me in some way (more the surgery changes than chemo). I have been able to work up to riding a bike 45 minutes to work once or twice a week -- I started slow at the gym, 15 minutes on a stationary bike and added 5 minutes at a time over probably 4-6 weeks. Then I started outside and went about 30 minutes until I could slowly add more (we have a bike sharing program in NYC which is great because I could just get off the bike and leave it when I got tired). I am also trying to do strength training 2-3 times a week, building off the program I was given in physical therapy, adding in some more legs and core work to try to begin to build back to something where everyday challenges are easier. I use very light weights and aim for high-ish reps (10-15). The hardest part of exercising is bringing my brain in sync with what my body can do now -- not pushing myself, not expecting much. Celebrating every time I exercise as the victory, not what I did. In week 1 post-chemo I don't do much more than try to walk 20-30 minutes each day. I do think my commitment to exercise has helped my energy tremendously.
Anxiety: after the GI bug incident, I found myself having borderline panic attacks when I went to the cancer center. So now I make sure I have someone with me when I go, thankfully my husband and my sister have had me covered, even if it's just for a blood draw or something minor. I also take anti-anxiety medication at night before sleeping for 3-4 days prior to infusions. I also have found guided meditation helpful (either Headspace app or thisiskara.com). It also feels really good to be past the halfway mark.
Hair loss: fistfuls of hair have been coming out when washed since the first treatment. I've cut back to washing as little as I can (every 2-3 days). I can tell the difference and see the thinning but my sister says she can't tell. I think this is one of the positives of CMF, hair loss is generally less. I was told the hair loss would taper off and the last shower I took there was less! I am hoping it is a trend!
Constipation / diarrhea / appetite / drinking issues: I've had all of this, constipation helped most by miralax and high-fiber foods like prunes or flaxseed, also Colace to soften stool. This usually goes away within the first week after treatment, depending on how many anti-naseau pills I need. I found that salads can give me diarrhea, so I'm eating more grains and less greens in general, and if I'm having an upset stomach day try to eat blander foods. When I have "metal mouth" and drinking water is hard, I've switched to watered-down lemonade and not worried about the sugar. I have noticed my appetite is less, and so I remind myself to eat regularly as I do feel worse if I skip a meal. Sometimes it seems like the "stop eating" switch is broken in a new way once I start, so trying to be mindful there too.
Creaky knees: this is a thing. A chemo nurse told me one of the drugs (I think the "M"?) can give you joint issues. I notice it mostly when exercising, in which case I stop the exercise or lighten the weight, or when playing with my kids, in which case I try to change position.
Wishing everyone a happy weekend and the very best with their treatments. I will also continue to post here for reference and check for questions!
DX'ed at age 41 on my first mammogram
1/11/2018, IDC, Right, Stage IA, 0/4 nodes, ER+/PR+, HER2- (FISH)
2/6/2018 Mastectomy: Right; Reconstruction (right): DIEP flap
9/2018, IDC, Right, <1cm, ER+/PR+, HER2-
10/4/2018 Lumpectomy: Right
Whole-breast: Breast, Lymph nodes, Chest wall