Weight gain AC-T, tamoxifen

I had dose dense AC-T chemotherapy (8 cycles) from Oct 2011 to Jan 2012 and have been on Tamoxifen since Feb 2012 (both with very mild side effects).  I was also terrified of weight gain since I was exercising hard, eating well and losing weight (which I need to do) just before my diagnosis last July. 

Amazingly, I actually was losing weight in the beginning of my chemo (because I was still eating healthy).  One of the oncology nurses told me the chemo increased your metabolism and that they wanted me to maintain my weight so I needed to eat more. (Then they made the mistake of telling me ice cream was a nutritious snack).  I never researched the increased metabolism issue but I had no trouble maintaining my weight during the 16 weeks I was on chemo.  As the Thanksgiving and Christmas holidays approached I started to eat more (as I always do) and never gained more than 2 or 3 pounds.  It was actually a plus for me that I could eat what I wanted for the first time in my life and not see my weight skyrocket.  So I think they were right about the increased metabolism.

I took steroids for the first 2-5 days of each chemo cycle.  (I tapered off as the cycles went on because I never had nausea.)  I noticed more energy from them but not increased appetite.  I continued to walk about 2 miles every day during chemo but otherwise didn't exercise so my exercise decreased dramatically during the 16 weeks.

After the chemo was over I realized I had to get back on a healthy diet (less calories, less fat, less sweets) because my weight was starting to creep up.  This happened around the time I started the tamoxifen which I assume lowers your metabolism.  It took me a couple of months but I'm back to losing weight and can't say that it's any harder on the tamoxifen than it was before.

One thing that has been a lifesaver was joining the LiveStrong Program at the Y.  It's three months of free personal training for cancer survivors.  I would highly recommend it if you live near a Y that participates in the program.  I started it while on radiation and it helped focus me on getting back on a healthy routine.

I hope this wasn't more information than you wanted to hear but I remember being where you were and weight gain was one of my biggest fears and it never happened.

Hope everything goes well for you.

Pat

I was told the AC for the first four cycles was the worst too but they also said you can pretty much tell how the other AC cycles will go based on the first cycle.  Both of those things were true (and none of it was bad except for my anxiety which got better with each cycle). 

The actual infusion day was a non-event (again except for my high anxiety).  I had a port and there was no pain with inserting the needle and no pain with getting the drugs.  They gave me an Ativan (for nausea and anxiety) so I was little sleepy but that's all.  The first time I was there for almost 4 or 5 hours because they spend alot of time explaining things and it was alot of waiting around to get the infusion.  But everyone seemed very focused, nice, and like they knew exactly what they were doing so that was all good. 

I had my first infusion in the afternoon, including the steriods for anti-nausea, so I didn't sleep great that night or the next but I did sleep.  On Days 2 and 3 I felt fine except for the anxiety that some horrible side effect was going to hit me and I called the hospital at least 3 times with things I was worried about that turned out to be fine.  (I'm an anxious person on a good day so that first cycle was a huge stress for me and my poor husband who had to watch me freaking out.) 

By the end of the 3rd day and for about the next 2-3 days, I felt weird (not like myself) but didn't have nausea.  My side effects were more saliva in my mouth, occasional lightheadedness and mental fogginess.  By Day 6 I felt better and after that I felt great for the rest of the cycle.  This pattern continued for all the AC cycles.

The advice I got was to drink lots of water (8-12 glasses a day for the first 4-5 days) and to eat small meals frequently.  I did the water faithfully for the first two cycles and then because I was doing so well cut back on it for the 3rd cycle and ended up feeling more weird and more lightheaded.  I went back up to the 12 glasses/day for the 4th cycle and it really helped so I'm a big proponent of drinking water to flush out your system.

The other thing I did was take 15 grams of a supplement called L-Glutamine powder twice a day for the first week of each cycle.  You mix it in water (or food like applesauce) and it has a slightly unpleasant taste but isn't bad.  This was recommended by another oncology nurse who said it would protect my digestive tract from mouth sores and yeast infections both of which I'm normally subject to and was concerned about with the chemo.  I religiously took this throughout my chemo and never had any digestive issues (except for some constipation at the beginning of each cycle that seemed to be related to the anti-nausea meds).

I actually can't remember much about the Taxol for the last 4 cycles because it was basically a non-event.  None of the lightheadness or mental fogginess.  Didn't feel weird.  Much better than the AC.  I was more nervous again for the first Taxol because there is a risk of an allergic reaction but they give you something for this ahead of time and monitor your blood pressure for the first 20 minutes.  The other thing I was worried about with the Taxol was peripheral neuropathy.  I had some very brief episodes of tingling in my fingers a couple of times but I'm not sure I'd have noticed it if I wasn't so hyper alert to everything that was happening in my body.  The occasional tingling continued for several weeks after I finished the Taxol but eventually went away completely.  (I think the L-Glutamine is also supposed to protect you from the peripheral neurapathy.)

I got a Neulasta shot the day after each infusion and was concerned about bone pain but again it was pretty mild and easily controlled by taking an Advil a couple times a day and it went away after a couple of days.  I read that taking Claritin before the shot helps with the bone pain but I decided to see how bad it was before trying this.  Since it didn't bother me I never tried the Claritin.

My hair started falling out somewhere around Days 17-19 after my first AC.  It was very slow the first 4 or 5 days and mostly fell out when I washed it.  Eventually, it got to be too much and too depressing to think about getting in the shower so I got a buzz cut which turned out to be a huge relief.  By that time, I already had my wig and some scarves so I was ready.  And again, my anxiety about what it would be like to lose my hair was much worse than the reality.

One of the things that I hated hearing from the doctors and nurses when I asked about what was going to happen to me was that everyone is different.  I did find this to be true from talking to other women.  Some had a bad time with things (nausea with the AC and peripheral neuropathy with the Taxol) and some didn't (actually most didn't).  My medical team told me to let them know of all my concerns no matter how trivial and I did that and they were very helpful.  So if for some reason, you do have a bad time with something, I would encourage you to ask what they can do for you.  When I complained about the increased lightheadedness they suggested the water but they also said I could come in for a saline drip that would take care of it.

I could go on forever about all this but I'll stop for now.  Let me know if you have any more questions.  Oh, one more thing--the other thing I did was listen to relaxation CDs that I got from my cancer center's library.  They were by Belleruth Naperstak (not sure of spelling) and they really helped until I got sick of listening to them.