Hi Ya’ll!
I just had my 6 month checkup yesterday, and initial blood tests came back really good. Iron counts, RBC & WBC counts, B-12 & Calcium are all good.
I have not been feeling well lately, but symptoms seemed random and would come and go. Today I got a call from Oncologist saying my potassium levels are low which would explain some of the bizarre symptoms I am having. Tingling/numbness on left side of my face, stomach problems, fatigue, twitching (eyelid & leg), ringing in ears, heart palpitations and muscle aches. The muscle aches and fatigue have gotten pretty severe, today I woke up in a lot of pain between my shoulder blades and my calf muscles. I keep saying I feel really, really old. Like 90.
It is good to have a reason for all of the things I have been feeling, but Doc is not sure what is causing my low potassium.
If I go one point lower they will admit me to the hospital for a few days and give me IV potassium.
For now I am concentrating on high potassium foods, supplementation & rest. Today was not a good day and I spent most of it in bed with muscle aches. I am not sure how I can eat any healthier…all the high potassium foods listed are main staples of my diet, (bananas, spinach, peaches, potatoes etc.) so that is frustrating.
Doc wants to see if we can get my levels up and if they will stay up. If they continue to misbehave, she will seek out what might be the cause of it. Potassium levels can affect the heart and kidneys and can be quite serious, so they want to stay on top of it.
For now, she wants to do CT scan and bone scan. It has been a full year and she wants to make sure we have our eye an anything that could be happening inside. It will also show a lymph node we have been watching. She does not think there has been change but wants to make sure. It will also give us an update on ovarian cysts and uterine thickening, all side effects of the drug Tamoxifen that I take for cancer protection.
Scans are on Monday.
One more thing if I may…
Doc brought up the new study that was done in January on Tamoxifen. They found that women who stayed on it for 10 years had up to 15 years of protection. Those are some BIG numbers. But honestly, I got pretty teary at the idea of staying on this drug for that long. I have been on it for 2 years and I was counting down the days to 5. Now the time has doubled, and I’m having a hard time with that. I don’t ever feel great on this drug. It is not fun to be on and I’m pretty pouty about it. Humph.
Anonymous
June 27, 2013 at 6:08 pmHi Amy, I just stumbled on your website through a friend checking out some of your wonderful homemade ideas! Thank you for that! I began reading your journey and I couldn’t help but want to share with you a ministry that has tremendous success with cancer and many other diseases and life issues that plague us. It is completely Bible based and I was healed of so much after visiting with them. Maybe you could check out their website- beinhealth.com. It is a group of loving devout Christians that are walking out their salvation daily. God has given the pastor there tremendous insight into disease. Check it out and may God bless you!
Anonymous
April 30, 2013 at 4:45 pmI know just how you feel! I am on votrient, for kidney cancer, which has recurred onto the pancreas. I don’t really feel sick; I just feel blah. trying to hard to work up some more stamina.
Cheryl
March 29, 2013 at 11:25 pmHi Amy,
Another BC survivor here. Mine wasn’t estrogen receptive (HER+) so I don’t have the tamoxifen, but Herceptin made me feel many of the same symptoms. Just wanted to share what a positive inspiration you are to me to continue fighting for my health. I found your blog shortly after I was diagnosed in November of 2011. Being close in age to you, and a mother to two precious girls close in age to yours, I identify so much with you. Just want you to know you are in my prayers. Stay strong in Christ. He will hold you through this!!
Christy
March 29, 2013 at 4:59 pmThinking of you Amy and sending prayers your way for continued good health. Don’t forget that apple cider vinegar is a GREAT source of potassium. Braggs is a great brand and is organic.
youngprekteacher
March 29, 2013 at 3:30 amJust recently found your blog. I too am a breast cancer survior, over 5 years. I took my last Tamoxifen on Dec. 31st. I had been on it for 5 years. I thought I was going to have to be on another drug when I was done with that, but doctor said no – so happy.:) I couldn’t wait to get off Tamoxifen. I am sure my cankles are because of it, although I still have them, maybe soon, they will go away. I see my oncologist in April for my first “yearly” visit and I will ask him about that new study, because I had heard that your chances of getting ovarian cancer was very high while taking Tamoxifen (not to scary you). A girl that is in my support group was three years out from cancer diagnosis when I met her over 5 years ago. Now she is battling ovarian cancer because of Tamoxifen. I am just so happy to not have to take any more medicine. I will pray for your health. And btw, love your blog!
Kari
March 29, 2013 at 1:10 amAmy, First, I want to say I am praying for you. Second, I hope you get to the bottom of the potassium woes – I think my husband is low on his and needs to add more to his diet – let us know what you find out, hopefully it is nothing sinister and very simple to fix. Finally, I just wanted to comment – you are a great inspiration – I love your blog, I love your pins and I love your attitude! I have also learned so much from you. Keep it up and keep the faith. -Kari
Mary Martin
March 28, 2013 at 11:09 pmI quietly read your posts and have never posted before. Just wanted you to know I an praying for you.
Michelle DeRusha@Graceful
March 28, 2013 at 1:28 pmWill pray on Monday, Amy – keeping you in my heart! xxoo
Anonymous
March 28, 2013 at 3:10 pmBest of luck Amy on getting your potassium levels up! Just as you I was counting down the days until I would be able to quit taking tamoxifin which for me would have been July 2013 but then was told by oncologist about the new study….so here we go again for another 5 years. I also struggle with the side effects from this drug and feel that it has aged me rapidly along with a weight gain of about 15 pounds that wont budge which before tamoxifin I was always able to control my weight. Thanks for sharing and I pray that you are feeling better soon!
upnorth
March 28, 2013 at 11:16 amAmy,
I will be praying for you and your family. Good news, but still need to keep going for you!!! MY hub see his doc today! Happy Resurrection Sunday!!
sixbrownbears
March 28, 2013 at 1:48 amPraying for you, Amy. Praying! Praying!
jeana
March 28, 2013 at 1:37 amOh Amy. Many many prayers for you. Thanks for keeping us updated. I love you friend.
AmyT
March 28, 2013 at 4:05 amI’ve been following your story for about a year and was glad to hear the positive reports thus far. My aunt was on Tamoxifen. I’ll ask her about any relation to potassium lows. Are you drinking too much water? That can cause you to have lower potassium too.My partner is diabetic and gets low potassium when she’s been consuming too many fluids/water from thirst related to her glucose highs. I get dips in potassium from a diuretic I take. The bananas and various other natural helpers do some, and I occasionally pop a potassium supplement. I think that this stuff is pretty harsh on your stomach. Going in to have IV potassium for a short time might be better than being in bed sick for a longer time. It’s all about quality of living. Go for what makes your daily living on average improved.
Good luck on all of your scans. You are a strong mama and I pray for you that your girls get to have you in their lives for a very long time and you are there to share their various future rites of passage.
Hang in there on the Tamoxifen and know that someone in WA is rootin for ya! 🙂 hugs from another Amy
sweetapple3-
March 28, 2013 at 2:26 amOh, Amy. Had no idea you were feeling so bad. I’m so sorry. And as healthy as you eat, I can imagine how frustrating that is….and then the tamoxifen thing. I just wish I could hug you and make you a hot cup of tea. Thank you so much for being real about it all. I love that you don’t try to tie everything up in a pretty bow. I’ve watched a dear one live with cancer for 9 years and you learn that you just can’t make it pretty. Prayers for you to the Healer that knows your body and created you fearfully and wonderfully. 🙂
Dana @ Happy Little Lovelies
Cara
March 28, 2013 at 2:21 amHi Amy,
I am glad you got some answers for your feeling under the weather, I will pray that you are able to keep thos potassium levels up! I will also pray that the Lord will give you peace in deciding what to do with the medication. He’s got this! In sharing a little praise with you, my girlfriends 5 year old son Carson got a cancer free scan today!!! WOOT WOOT!!
Anonymous
March 28, 2013 at 1:16 amPraying for you! Had my 1 month check up after mastectomy surgery Tuesday. All is going good. But know about the bad days also. I’ve not had any problems w Tamoxifen, could it be the dosage? Stay strong and healthy
Cheryl
Andrea
March 28, 2013 at 12:54 amCheck with the dr aboutusingthe Salt substitute NoSalt which is made of potassium. That might be an easy way I get your potassium p.