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Just need to vent


Jennedy

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I started on Tagrisso on 7/27. I had minor issues with dull headaches and diarrhea and a little nausea. Then I got an infusion of zometa. I felt great the rest of that and early the next day. I met friends to walk 9 miles but could barely drag myself in after 7.5. OK. Lesson learned respect Zometa. I felt great a few days later and was walking 2 miles daily. Then I had another bad weekend - worked until 5 AM Saturday (IT don't ask). Then the grandkids came over the day and overnight. I got a decent night's sleep that night. Still didn't feel great but I was doing some walking. This we i have SOB, my cough is back with a vengeance and I get light headed. And the fatigue. I know these are all side effects and I am fairly certain the SOB and cough are worse due to allergies. Gotta love the Ohio Valley. They have me monitoring my BP which has always been low.  Tonight it was 116/67. I keep my fluids up almost exclusively water except for a daily cup of decaf tea. I have started to pay more attention to my diet. 

Is this the way it continues or will it taper off? I am fairly certain Tag is working because the blueberry sized lump above my left collarbone is almost undetectable.

Thanks for reading my rant. I know many of you are dealing with much more frightening things right now.

Jenny.  

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Jennedy

sorry 2 hear this I am a newbie also I have been coughing a little 

I haven’t starte Chemo yet my Oncologist is going to video call

me Tuesday afternoon to discuss my treatment 

I am at stage 4 in my right lung

dont worry about the rant not good 2 keep it all inside 

to much stress not good for U

hope u feel better 

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Hi Jenny, 

I know exactly what you are talking about!!!!  I'm taking a targeted therapy similar to Tagrisso and maybe I can offer some insight about what worked (or more along the lines of what didn't) when I started treatment.  

First of all- report the SOB to your doctor,  we can no longer assume regular symptoms in the post cancer world.  I had something similar which turned out to be a very serious side effect of the targeted therapy, pulmonary edema.  It was easily managed by Lasix and Potassium.  

I was a competitive rower at the time I was diagnosed, before cancer (BC) I rowed 10-12K in the morning and walked/ran three miles in the afternoon.  My first targeted therapy mistake was the assumption I could resume my previous activities.  Fatigue comes along with the targeted therapy.  I struggled for months trying to get "back into shape" and this was met with months of disappointment and frustration. Energy is a pretty precious commodity.  Since I'm from NJ I think about it in terms of a pizza pie, there's 8 slices, how much energy goes into each slice to get me to 8.  If I walked five miles, which I'm sure I can do but it would use all 8 slices, no room for anything else. 

 

  Here are some tips that I wish someone could have shared with me to save me the heartache: 

1. Try reverse engineering the walking, instead of nine miles, try two miles and see how you feel for the rest of the day.  Over the course of each week, incrementally add a little bit more.  For me, PC my walking limit with other daily activities is 2.8 miles. (3.2 was too much, 2.5 was too little)

2. Read the spoon essay: https://www.theghoshcenter.org/blog/reduce-stress-feel-better-spoon-theory (similar to my pie) 

3. Give yourself permission to go easy on yourself, be grateful for any level of activity.  There will be some targeted therapy days when you might have a good night's sleep and wake up WTH, with zip energy.   Happens despite our best effort.  Don't fight this, ride the relaxation wave and gear up a good book or Netfilx.  It's okay to rest.  Your body is fighting a war and rest is very important.  

4. You already figured this one out, respect the "off button", no way of knowing when this is going to happen, but you will get very good at managing your energy so this happens less often. 

5. Keep moving, even if it's just a little bit on the wipe out days.  A really short walk (5-10 minutes) is better than nothing. 

Be patient and persistent, you WILL get the hang of this. 

Sorry for the long response but your post really hit home for me.   Carry on! 

Michelle 

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Thanks @RowerMichelle! I did report all my symptoms to the oncologist. I see him Friday. We'll see what he says.

I love the the pizza analogy! 

As a stubborn independent woman, I need to learn to ask for help and recognize my new limitations.

I'll try the incremental walking. I do walk my little dog 2x every day. Its just 1/4 mile round trip but it is a hill.

Thanks for taking the time to respond

Jenny

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