Dis Breast Cancer Survivors Part III - GAGWTA!

[wdw4us2]

Good morning everyone. I finally starting feeling better on Saturday. I didn't expect to have so much trouble with the first round of chemo this time. Turns out I had issues with the Nuelasta shot, which didn't happen during my last course of chemo. I was experiencing intense bone pain for days and it took a lot out of me. I wasn't much fun to be around most of last week.

Our house has finally joined the 21st century. We are now wireless! I sent DD out to get a laptop for me to replace my PC that died back in August. I wanted a laptop since I'm anticipating spending a lot of time in bed over the next few months (if my past experience is any indication) and I don't want to be cut off from everything again. I can also take the laptop with me to chemo since they have wireless, too. Besides, I can watch DVDs during the infusions - should make the time go by faster.

DD went back to UCF yesterday. I miss her already. She was so helpful during the month she was home. Not that DH and DS aren't helpful, but it's just easier having her around because we are so in sync with each other. Besides, she talks and now I am surrounded by just the monosyllabic boys once again lol.

I started walking again yesterday. I really have to try to keep up with this before the next round. Hope everyone here is doing well and I'll try not to be gone for so long.

 

[CherylDan]

Glad you are finally feeling better Lisa.....sorry this time around is being so difficult. Sounds like the new laptop is working out great for you! Maybe you can do some sort of web cam talk with DD? My little netbook has something like that, but I have to admit that I don't have a clue how it works.

Laurie, I had to laugh at the very long hot stones massage!!! OMG, you are much braver than me! Sounds like some kind of cooking technique.....Can you tell I've never had a massage? Seriously though, I hope you enjoy it, and start getting some of those problems resolved.

I bought The Sims 3 game the other day and thought I'd install it and play a little bit last night.....wow, what a timesucker!!!! Next thing I knew it was 5AM. I swear I have NO idea where the time went!! Gotta say I'm a little on the sleepy side today.

GAGWTA!!!

 

[Pea-n-Me]

I was experiencing intense bone pain for days and it took a lot out of me.

I had that really badly as well.

 

[marcij]

Sorry to bother you guys again -- another question here. Day 3 was bad, 4 was almost as bad but a little better. 5 is not too bad but I'm still having Diarrhea and stomach is still a little off. Not nauseous but feeling wonky. Anyone else had symptoms last this long? I know Lisa had a terrible time with the shot. Has anyone had long effects from the chemo too? For some reason I thought it would just be 3 or 4 days and then gone. Boy was I wrong! I'm assuming this is normal but just wanted to see if anyone else thinks this is normal.

Lisa -- sorry for your extra pain. I hope that doesn't happen with the next one.

 

[Pea-n-Me]

Marci, are you doing the every two week dosing?

IIR, during the A/C, I would feel ok for a few days, then feel really awful for about a week, then start to feel better just before the next dose.

My doc used to say it's designed that way if you think of it in terms of cancer cells. They're smacked down, and just as they start to rise up again, they're smacked down again.

The "agita" I had (or "wonky" as you refer to it ) was pretty much constant. They had me on a pretty strict regimen of anti-emetics throughout, and I believe that helped.

Once I finished the A/C and moved onto taxol, things changed. I had to begin the neulasta and procrit injections, which I think made things worse, and combined with the taxol, caused that horrible pain that made it unbearable to do much more than lay in bed for a few days beginning about 36hrs after administration, but that varied dose to dose. IIR, does one and three for me were really bad. The others were more tolerable, but still quite uncomfortable. Will you be doing taxol?

What are you doing for complementary therapies? Any?

I don't think I have any long lasting effects from the chemo, but I do worry about whether it affected my bones and bone density, as I seem to be having more arthritic problems than I expected to have at this age. Of course, that could be age and genetics related, but I wonder sometimes. Nobody else (on my medical team) seems too concerned with it.

 

[wdw4us2]

marcij - Last time around I had issues with diarrhea, too. The nurse practitioner at my oncologist told me the best way to relieve that problem - coconut macaroons. You have to make sure they're the kind from a bakery, not the cookie type in the grocery store. I would eat one with everything I ate and I never had another problem.

 

[marcij]

Marci, are you doing the every two week dosing?

IIR, during the A/C, I would feel ok for a few days, then feel really awful for about a week, then start to feel better just before the next dose.

My doc used to say it's designed that way if you think of it in terms of cancer cells. They're smacked down, and just as they start to rise up again, they're smacked down again.

The "agita" I had (or "wonky" as you refer to it ) was pretty much constant. They had me on a pretty strict regimen of anti-emetics throughout, and I believe that helped.

Once I finished the A/C and moved onto taxol, things changed. I had to begin the neulasta and procrit injections, which I think made things worse, and combined with the taxol, caused that horrible pain that made it unbearable to do much more than lay in bed for a few days beginning about 36hrs after administration, but that varied dose to dose. IIR, does one and three for me were really bad. The others were more tolerable, but still quite uncomfortable. Will you be doing taxol?

What are you doing for complementary therapies? Any?

I don't think I have any long lasting effects from the chemo, but I do worry about whether it affected my bones and bone density, as I seem to be having more arthritic problems than I expected to have at this age. Of course, that could be age and genetics related, but I wonder sometimes. Nobody else (on my medical team) seems too concerned with it.

Yes - every two weeks. The term wonky came from a British friend here on the DIS!!!! I did have to take the nuelasta shot last Friday. After four of these a/c I take two weeks off then do 12 weeks of taxol.

I do have several anti-nausea drugs that they prescribed and I've been rotating them. What other things can you ladies suggest? I already have arthritis (Psoratic and they won't let me take any of my arthritis drugs -- celebrex, methotrexate and humira) so I'm pretty miserable with fingers bothering me and my hip is pretty bad. When I had the DIEP it inflamed the arthritis causing bursitis but they couldn't give me a steroid shot because my port was about to go in, so they prescribed valiaum and vicodin. I've been hesitant to take them so I've been doing motrin since I'm past the last surgery.

marcij - Last time around I had issues with diarrhea, too. The nurse practitioner at my oncologist told me the best way to relieve that problem - coconut macaroons. You have to make sure they're the kind from a bakery, not the cookie type in the grocery store. I would eat one with everything I ate and I never had another problem.

Wow -- now that's an alternative therapy right down my alley!

 

[smiley_face2]

Hello all! Had my surgery on Friday and am at home recovering. I go to see her next wed. for a check up & to find out if they found any cancer cells in my lymph glands. They took the first few sentinel nodes after having an injection of radioactive stuff into that ****. They injected it with blue dye while I was out for the surgery. I'm getting pain down the inside of my arm, it's moved down to below my elbow, does anyone know if that's normal? Or should I call?
Snappy. A sweet Georgia brown is a chocolate confection made by the Purdy's chocolate company. Salted roasted pecans held together by amazing chewy caramel topped with chocolate..... sweet and salty, chewy and crunchy and creamy all in one! Mmmmmmmm
Marcij I sure hope you get feeling better quick! Apparently I'll be starting on my chemo about the end of the month once I'm healed up. I've had pretty bad stomach issues for years now, which I've had just barely under control for the past year or so, I'm not looking forward to newmstomache issues :-(

 

[luvmarypoppins]

Good afternoon ladies

smiley - glad to hear your surgery is over.Sending good thoughts and prayers for healing and not too much pain.

Lisa and Marci - so sorry you are both having digestive issues.

Laurie - I guess its like you have to start from the ground floor again with all your computer stuff. A beer and massage is definetely callled for.

Cheryl - Hope you have a safe trip and that your dd gets adjusted and likes her room mates.

Well lets just say I was a bear to be around last night. I was doing alot of growling. The pain in my stomach was terrrible after we came home from the grocery store. It was on the L side where the ports were for my laprascopic surgery and not the usual middle. I had my school meeting today at 3 pm which I skipped. We are suppose to have about a foot of snow tomm. Oh what fun. 4 hungry men in the house all day.

GTAGWTA. Blessings to you all always.

 

[MerryPoppins]

GAGWTA! Thinking of you all. Hoping everyone is safe and warm.

 

[smiley_face2]

Luvmarypoppins...I'm so sorry you are having such pain! I've had an illness for about 12 years now and had 9 daycare procedures and finally one huge operation that kept me in hospital for over a week for it back in 2002. It helped a lot, but I still deal with issues every day and have horrible pain from it on average a couple of times a month. I have dillaudid for it, but I hate the way it makes me feel! I've been on my knees with the pain, crying and wishing for anything to take it away! My family has learned to just ignore my very short temper at those times, and they still all love me anyway! Before all this happened, my gastroenterologist had decided he wanted to remove my whole esophagus, and the top portion of my stomache, but I thought I was going to wait untill it was just too much to stand, maybe if I had to be on pain meds all the time, or my general health started to deteriorate. I had a biopsy and cat scan on my esophagus, stomache etc. just a year before this bc diagnosis, they reviewed that and said there was definitely no sign of the bc on the cat scan, so I know this thing has grown super fast. from invisible to 2.5cm in 15 months. While my one sister had bc and lung cancer about 3 years ago, and is a survivor, my other sister died from her cancer at the top of her esophagus, so I worry about that a lot. Another thing I need to talk to my dr about on wednesday. anyway, I just wanted to say I know how you feel having to deal with ongoing issues and pain, and family and you have my heartfelt sympathy!

 

[smiley_face2]

As I've mentioned, we ended up cancelling our Christmas trip because I got my diagnosis just 3 days before we were supposed to leave and were just too traumatised....since then we have talked with our family and had decided a big family trip, all the kids and grand kids was going to happen in the fall. I'm assuming/hoping all my treatment will be over with by then and we will have something to celebrate!
Today the new entertainment/annual passholder rates went up at Hojo's so I've booked us in... 8 adults and 5 grand babies for mid November in between Remembrance day and Thanksgiving now for the next few months of torture, I will keep this in my mind, give me something to do the planning for to get me through those miserable days....I'm so happy!

 

[wdw4us2]

Great attitude Smiley! Looking forward to a WDW trip is definitely a good idea. I did the same thing earlier this year during my first course of treatment. I'll have to plan another one for later this year after I'm recuperated from my current course of treatment.

 

[snappy]

Absolutely agreed, Lisa and smilie.

I think the doctors should write a script for WDW trips. It is not only the trip itself, it is the anticipation and looking forward to the future that is healing, IMHO.

Smilie, has the pain in the arm subsided? I remember having pain in the arm too after the mastectomy and node removal but I had the full removal. I did call about the pain after the surgery and the doc on call told me it was normal based on the extent of the surgery I had.

Even 6 plus years out I sometimes get a twinge but it is very subtle. Not like the early days.

MaryAnn, any let up in the pain?

On Monday I did have a Thai yoga massage (basically stretching) followed by my hour and half hot stones massage. I had to go to work for about an hour afterwards to get some checks signed and I was so relaxed I could barely form words. I had to skeedaddle on home.

I also went to the doctor on Monday am since I got no sleep the night before. My new internist ended up prescribing a non-narcotic called Vistaril. It is in the benedryl family. Benedryl always makes me sleepy, I have taken it for years since I had bad allergies in my youth and there wern't many other good allergy meds back then.

Vistaril helped me sleep 12 hours Monday and Tuesday nights. I decided to lay off of it one night and took it again last night but it did not seem to really help me sleep although I am very tired this morning. It seemed like I could not get warm enough last night to sleep. I think I am ready for spring.

I may try it more over the weekend to catch up more on my sleep deficit but I think Vistaril may be just too strong.

I am still waiting to see if the data to my accounting system can be restored, almost one month later if you can believe that. I am recreating stuff manually in the meantime. It is not much fun. Everyone is doom and gloom anyway at work due to the certainty now of layoffs and cutbacks (drop in funding sources), so in a weird way I am glad I am immersed in my own little world. I am tuning the gloom out.

Also, trying to look for the silver lining, as we all do. It is always there, sometime you have to really dig around to find it.

Another positive is that DD15 and I are scheduled to go to WDW and stay at the Boardwalk during Mardi Gras. We leave March 5th, which is just after I have more deadlines. I think we will still be able to go, good Lord willin' and the creek don't rise (Ah, the Spike Lee Katrina movie).

Time will tell.

GAGWTA!

 

[luvmarypoppins]

Good afternoon ladies

smilie - how wonderful that you have your trip to look forward too!!

Lisa and Marci - hoping that your treatments are going well

Laurie - hope you can get some sleep. I dont even know what that is, lol. Between my stomach pain, the neck dissection and dh snoring or working late and shining the light into the room, there is no sleep for me.

Merry - I am glad you got to post something. That is a small success. Wishing that issue could get resolved for you.

My pain is doing better for sure, Praise God!! I am putting more of the xmas stuff away but doing it slowly and stopping for a break and to sit down etc. Also the draining seems to be about non existent, so that is good. Now to see if it comes back. That is the whole problem.

Tomm. dh, ds20 and ds19 will leave on the trip to Beijing and San Francisco. 9 long days. It will be quiet especially if ds 23 has basketball coaching after work. He has off Mon. and said he would take me to the grocery store. Hmm, food is calling him for sure. Dh will come back on a mon. and then leave wed. for california again, sigh, sigh.

Alyssa wrote me a little thank you note. I got her some candy and pens when I was in Disney World. I really didnt iknow what to get her. Clothing is too hard. She is about a 10 year old size but is 20 yrs. old etc. Maybe I will look at some jewelry next time?

GTAGWTA. Have a great day everyone.

 

[smiley_face2]

LuvMP...I'm so happy to hear your pain is better! It leaves you so weak though, when it eases up doesn't it?! You have a very "jet set" family!! lol... maybe you will get a little quiet time...if you're like me though, you will miss all the action when they are gone! lol....
Snappy...I still have the pain, it's like a long burn all the way down my arm. If I don't move at all I don't feel it, but any movement, If I straighten the arm right out or try to reach up for something, or if I touch the skin there... wow!! I went to see the nurse practitioner and she said she's pretty sure it's just the nerve that's been damaged, I will see this wed. when I see the surgical oncologist for my followup visit I guess. I think you have the perfect attitude where your work is concerned! if anyone will be kept on it will be you! I'm sure TPTB see things like that, and want people who will buckle down in the hard times and try to maintain a positive attitude as well! in the meantime, I hope you can get some sleep!
wdw4us2....I hope your current course is over soon so you can get back to the (real) World....lol...I consider this all to be a bad dream....kinda like the Epic Mickey game hubby and I are playing right now....we just have to keep on going, fixing things up as we get to them, battling the bad blottlings.... till we can break out back into the real Disney World!! Lol... it's true.... it's what I'm thinking every time I play! lol...
For me, it's Disneyland we will be going to...never been to WDW. regret not stopping there many years ago when we stopped over in Miami on our way to St. Thomas. It's a very very long trip from here, not sure if we will get the chance to ever see it or not, but sometimes, trips come up that look like it would be almost cheaper for us to go all the way there instead of DL!
I'm once again...so glad I found this section of the DIS!!

 

[wdw4us2]

I'm so happy the weather has finally warmed up a bit here. I was able to wear shorts on my walk today. Trying to get everything done this week before chemo #2. My friend is coming over tomorrow to cut my hair short short tomorrow. It has been rapidly falling out the past few days. I thought I would have until after the second treatment before it started coming out again. I'm not shaving my head this time around. Trying not to be depressed about it since I know it does come back, but it's hard. I was finally getting used to and liking the shorter hair.

 

[smiley_face2]

I'm so happy the weather has finally warmed up a bit here. I was able to wear shorts on my walk today. Trying to get everything done this week before chemo #2. My friend is coming over tomorrow to cut my hair short short tomorrow. It has been rapidly falling out the past few days. I thought I would have until after the second treatment before it started coming out again. I'm not shaving my head this time around. Trying not to be depressed about it since I know it does come back, but it's hard. I was finally getting used to and liking the shorter hair.

I'm so sorry. as you see in my signature pic, I have long hair, have had it all my life. I'm very upset about the thought of losing it. I know there are more important issues at stake here, but it still hurts.

 

[marcij]

LuvMP...I'm so happy to hear your pain is better! It leaves you so weak though, when it eases up doesn't it?! You have a very "jet set" family!! lol... maybe you will get a little quiet time...if you're like me though, you will miss all the action when they are gone! lol....
Snappy...I still have the pain, it's like a long burn all the way down my arm. If I don't move at all I don't feel it, but any movement, If I straighten the arm right out or try to reach up for something, or if I touch the skin there... wow!! I went to see the nurse practitioner and she said she's pretty sure it's just the nerve that's been damaged, I will see this wed. when I see the surgical oncologist for my followup visit I guess. I think you have the perfect attitude where your work is concerned! if anyone will be kept on it will be you! I'm sure TPTB see things like that, and want people who will buckle down in the hard times and try to maintain a positive attitude as well! in the meantime, I hope you can get some sleep!
wdw4us2....I hope your current course is over soon so you can get back to the (real) World....lol...I consider this all to be a bad dream....kinda like the Epic Mickey game hubby and I are playing right now....we just have to keep on going, fixing things up as we get to them, battling the bad blottlings.... till we can break out back into the real Disney World!! Lol... it's true.... it's what I'm thinking every time I play! lol...
For me, it's Disneyland we will be going to...never been to WDW. regret not stopping there many years ago when we stopped over in Miami on our way to St. Thomas. It's a very very long trip from here, not sure if we will get the chance to ever see it or not, but sometimes, trips come up that look like it would be almost cheaper for us to go all the way there instead of DL!
I'm once again...so glad I found this section of the DIS!!

I had the same exact problem with the pain shooting down my arm after I had to have the rest of my nodes taken out (sentinel node only had 3 out and no problems) during my bi-lateral with DIEP. My surgeon sent me to a lymphedema clinic for physical therapy and to watch for signs of lymphedema. It has helped me a great deal. I wear a compression sleeve on that arm (not a custom one but it was custom fitted) and it's pretty much taken away all the shooting pain. I have to be careful about sodium intake, not lifting anything too heavy, ways I move my arm etc. but it has gotten much better in the 4+ weeks I've been working with the therapist. I only go 2 times a week now, and she's taught me a lot about the lymph system, nerves etc. They told me at the very beginning that the nerves should recover but the timeline was different on everyone. I hope you get good news when you see your surgeon that it is only temporary.

 

[MerryPoppins]

I had shooting pain & terrible itching, scratching didn't touch it. Nerve damage.