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My post-chemo experience

msbrook2
Posts: 28
Joined: Mar 2011

Like most people I didn’t really know what to expect once my treatment ended. I just knew I felt VERY weak and was curious about when I’d get my hair back!!

I experienced a few surprises along the way and I thought I’d post a discussion item here to capture them for others. Others may want to add their experiences as well.

My treatment was R-EPOCH followed by 20 rounds of XRT Radiation (for a mediastinal mass – Large B Cell )

STRENGTH: For about 6 weeks following treatment I was very weak and very sluggish. About 4 weeks following treatment my red blood count finally got back up over 10 and that helped minimize the chronic fatigue. But , my muscles remained weak and my knee and hip joints were very sore. In fact, I could barely stand up from a seated position with pushing up the arms of a chair. I started very light exercise about 4 weeks after my treatment ended; by light, I mean it was barely pushing the pedals on the recumbent bike (careful not to overwork my heart) but it felt good to be doing any level of exercise again. I slowly started to increase my speed – watching my heart beats per minute carefully and now (8 months later) I am just about back to where I was before treatment – and have a stronger core. I gained 15 1lbs during treatment and with a little more attention to my diet and the ability to exercise I have finally taken those off. The biggest thing that helped me get my strength and energy back was consistency at the gym. In addition to 30 minutes of aerobic activity, I added a Core Pilates and Yoga classes to my routine. The core class has REALLY helped with my joint and back pain - it is not an issue at all now; the yoga class has helped with flexibility. I’d recommend both.

HAIR: By about week 5 or 6 I started to see some very light “peach fuzz” on my head, but overall my hair has grown much more slowly than I hoped/expected. About 5-6 months after Chemo I had good coverage, but my new hair has come in dark and curly and impossible to style. I’m now at 8 months out and it is still too short to do much styling, but it seems to be growing faster now. I have continued to wear my wig because it makes me feel more feminine (and younger!). I’ll probably drop it all together, though in another 2 months. My eyelashes were the first thing to grow back after Chemo, but they have now grown and fallen out twice since Chemo. I understand this is not uncommon and the cycle can sometimes last for a year or more. I’m going to see a dermatologist to see if there is anything I should be doing to help them stay in. Since the first loss, I have not worn mascara – thinking that could be contributing to the problem.

FUNNY TASTES and SMELLS: By the end of my chemo regimen almost everything except salad and fruit tasted funny to me. Eggs, Meat and Popcorn were the worst! That lasted for quite some time after my last round of chemo. It is now 8 months since Chemo and my taste buds are JUST about back to normal. A few things still taste funny, but it is not quite as strong (or maybe I’m getting used to the new taste…). Sometime around the 3-4 months mark I started noticing a strong “gaseous” smell where ever I went. It reminded me of the way my garage smells when it has been closed up for a while, but I smelled that 24/7 no matter where I was. That lasted probably a good 4 weeks, then went away and came back intermittently until just a month or so ago.

NUMBNESS: The Vincristine that was part of my treatment plan is notorious for causing neuropathy. A friend of mine who was going through the same treatment as me has had some serious pain in his feet from that drug that still has not gone away. The numbness in my fingers went away pretty quickly – probably within 4 weeks or so following my last round of Chemo. The numbness in my toes is slowly subsiding, but I can still feel it a bit 8 months after the fact. A doctor told me your nerves in your toes regrow as fast as your toenails. My toenails have been growing pretty slow, but the change in numbness seems to be tracking with the regrowth. Both my finger and toe nails had extensive damage from the chemo. They started peeling and breaking way below the quick. I used Sally Hansen nail wrap polish to try to keep them from breaking off completely and for the most part that worked really well. It took about 4 months for my damaged fingernails to grow completely out, about 6 months for my damaged toe nails (except big toe) to grow completely out and at 8 months, I’m still waiting for my big-toe nails to grow out.

Those were the big surprises for me...

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

msbrook,
This is short and sweet,but I can identify with most of what you described. My treatment was R-CVP. None of this stuff is a picnic. Its takes a while to get anywhere near normal again. John

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