Chemo May 2013

Carla - only 2 more Herceptin infustions.  YAY!!!!  Then, I get my port out.  Very excited about that.  Although the port has really been a saver for my veins, can't say it's the most comfortable thing in the world.  But all in all, not complaining.  Just will be happy to finally be coming to the end of all the infusion type therapy.  Then, just oral meds (Tamoxifen - which I've been taking since last October).  My onc says I will be on some type of oral meds for 10 years because of my age (I am 41 so I haven't hit menopause yet).

It's so nice to see everyone is finally starting to get back into the swing of things - although not perfect, it's a far cry from where we all started last year

Carla - I am doing okay on the Tamoxifen.  At first the hot flashes were very difficult to deal with and my doctor said there were some medications I could try that would help or, I could opt to see if they even out.  I opted not to take any more medication and just wait to see if they got better.  I am glad I did.  I still get them, but not nearly as bad as I did in the beginning.  It took me about 6 months for it to all even out.  I also take a baby aspirin a day to help ward off any blood clots due to the increased risk of Tamoxifen.  So, overall, I think I can handle it for the next 5 years.

I haven't been on here for a few weeks, but it doesn't look like I missed much.  I hope this means you are all doing well.

I am back on anastrozole, my onc wasn't happy I had been off of it for two months.  My feet aches are worse again (they never went away) and my fingers are aching.  I am tired most of the time and my hot flashes are worse.  Is it really worth it?

I had my dog at the Pet ER twice within a week at the end of June.  She is a 10 year old Beagle mix.  She hurt her neck and was in so much pain that she wouldn't move.  They did an Xray which looked ok and gave her meds, she was a little better for a couple of days and then was worse.  When I took her back they told me she most likely had a bulging or slipped disc in her neck and wanted to do an MRI and surgery asap on her.  This was right before my road trip so I declined those at that time, so they gave me another med for her.  I was medication my poor dog twice a day with three different pills.  I almost didn't go on my trip but instead boarded her at a place that could keep her comfortable and on bed rest.  I started her on my aroma touch essential oil and she started feeling better when I left.  When I returned she was doing a lot better, then had been giving her the pills and using the oil on her neck.  I picked her up Monday and gave her one pill that night and none since.  I am only using oils and she is almost at 100%, she is even doing full body shakes and is happy.  I am so glad I didn't tell the vet to go ahead with the MRI and surgery.  I just didn't want to put her through that and wanted to give her some time to heal on her own.  Maybe I should be more faithful with the oils for my aches like I am for her.  She likes it when I get the oils out, she begs at me and then just stands still while I rub them on her. 

Another happy note, I had a nice road trip with my daughter, it was just the two of us for 3 days then her husband joined us for the last 4.  I did miss my boyfriend more than I wanted to admit.  He missed me as well and had roses for me when he saw me the first time after I got back.  We have known each other just over two months now and things are going really well.

Teresa and Annie so good to hear from both of you. It has been quiet on the board.  I check it out to see what's going on with everyone also.  

My hats off to both of you with the anastrozole.  I chose not to take it anymore.  Too much for me to handle.  I really hope that I'm not sorry one day for my choice.   The aches and pains were just starting to come  on but the memory thing...what it did to my head...I am already short changed in that regard.   It was getting harder and harder just to have a conversation with someone. Quality of life. 

Teresa so glad your doggie is o.k. now and that your road trip went  well.  Having that much time with your daughter on a trip is such a blessing.  Exciting that things are going well with your boyfriend.  )

Annie you are doing  many beneficial physical things in spite of what anastrozole is doing to her head and body.  That's great. I like what you said "trying to live a normal life after the apocalypse."

Got the o.k. from the wound care center to go back to work.   So I've started to look. Meanwhile,  while one door is closed (not having a job) another is open.  I have been able to go visit my grandchildren more this summer. 7, 9 and 11(on the 4th of July) years old. They're growing up so fast.

Also this summer I have the opportunity to help my mom and step dad 6 or 7 days out of the month.  She's 94 and he's 89.  That's not just this summer.  I've been doing that for awhile. 

My husband has been putting a quad copter together.  It's gotten to the point where it can be flown.  It's fun to watch.  When he gets his goggles, he will be able to fly it 10 miles in distance. At that point,  the video he will be able to take ought to be pretty awesome. 

Don't have the energy to do much more than mentioned above.  At least it's more energy than I had last year at this time.

Hope to hear an update from everyone else. 

Carla

Carla,

I had only 3 lymph nodes removed during my lumpectomy - and I still got lymphedema during chemo. My onc was surprised as he said it usually doesn't happen with only a few nodes removed. My elbow and lower arm got "bumpy" and the back of my hand near the thumb swelled up. I met with a lymphedema therapist and was taught the massage techniques to drain the swelling. She told me I had a mild case but I'd have to be careful for the rest of my life....wear a compression sleeve during exercise and when I flew on an airplane etc. The massage did help the swelling go down but I had some lymphedema all the way through chemo. Once that was over, all the swelling seemed to go away. I know we retain fluid during chemo so I'm thinking that made it worse. I stopped the massaging and quite frankly didn't think about it much. Also, never purchased the sleeve  which was $150 and not covered by my insurance.

Now, a year out, I'm noticing some slight swelling at the base of my fingers on my bc side hand. No noticeable swelling up the arm but certainly a reminder that it's still there. I will buy the sleeve at some point, especially to fly with but overall my lympedema is just a minor annoyance. I write in my job so the fingers get stiff from the swelling when I type. I'll keep watch though as I really don't want it to become a big issue in the future.

Are you having major issues with lymphedema?

Annie

Pat - Good to hear from you and glad you're doing well. I steered clear of "Fault of Our Stars" ....knew it would be upsetting and luckily my daughter wasn't anxious to see it either.

Yes we are survivors - hopefully for a long, long time. Enjoy the carefree days of summer......

Annie

I haven't had any issues with lymphedema as of yet.  I had a total of 20 lymph nodes removed with my mastectomy on the right side.  I will be flying in November and am hoping I have no problems......

I took two months off of anastrozole and went back on it at my Dr's urging three weeks ago.  I am now depressed and pissy and my bottom lip looks like I got stung by a bee while sitting in the sun for hours.  My lip is swollen, peeling, red and hurts.  I haven't had the aches Annie was talking about come back yet.  I was walking like a 100 year old when I was on the pills before.  I'm not having that issue again.......yet.

My lip just kept getting worse so I called the Dr and they wanted to switch me to a different med, aromasin.  However my copay for that is over $200 for a 30 day supply.  I said no thanks!

Good question Carla, I still haven't called my Dr to let them know I didn't fill the prescription.  I really just want to be done with it.

Tomorrow I go to a different Dr for a consult on my sleep issues.....I should probably be on my meds when and if he does any tests, but I don't want to.  I just hate being tired all the time.  Isn't it time we all felt good?

Oh yeah things are going well with my man Chuck. 

So I'm not taking Aromasin, they found something else called Femera or something and my copay is $15 for a month.  So I started on that last Thursday and so far I am doing good.  They said if I can't take this one my last option is Tamoxifen. 

I have been sleeping better the last while, I am sure it is the different meds that are causing my feeling tired all the time.  Anyway he wants me to do the overnight sleep study.  Should I do that if I think I am doing ok?  He said my finger oxygen test was borderline abnormal and that was when I wasn't sleeping very well.  I don't really want to go somewhere and be hooked up to machines while I try to sleep when I don't think I have an issue. 

Today is my three month anniversary of meeting Chuck.  We spend our weekends together then he goes home and I see him for lunch one day during the week.  I like this arrangement because I enjoy my time now.  After my husband passed away I never thought I would say that.  Chuck is currently working 3pm to 11pm M-F and he works really close to where he lives with his brothers.  I think it is a great arrangement however his shift is going to change soon and he will work days like I do.....I am not wanting someone with me 24/7 is that bad? 

Good job on eating healthy Carla, I really need to start doing that and exercising too. 

Carla,

I did the at home finger sleep test and now they want to do the more extensive one, that is why I have to go to the sleep center. 

I quit taking my newest hormone blocking pill last week.  I was slipping back into depression, more tired, ornery....just not me.    Feeling much better this week.  Waiting to hear back from my Dr to see if he can see me sooner than September 5th so we can discuss things.

I did my overnight sleep study last night.  I had a TON of wires hooked up to me but I was able to get some sleep.  Sounds like I need to wait a couple of weeks for results from that.

I'm still hoping the silence from others means things are going well.

MomofSam - That had to be horrible with your port pinching like that.  I'm glad you finally have it out.

The Onc office called today and really wanted me to try the Aromasin.  I am not going to pay over $200 per month for these pills.  So I asked if I could try Tamoxifen, they are letting me try it now.  So we will see how it works for me.

I agree with the quality of life, I'm glad you were told that.  I am sore now and getting ornery and sad, I started the Tamoxifen last Wednesday.....I am going to tough it out until the 5th if I can. That is when I will see my new onc. 

Teresa how did it go with your new onc. AND how are you doing on tamoxifen? 

Carla