Dis Breast Cancer Survivors Part III - GAGWTA!

[luvmarypoppins]

Good afternoon ladies

Annie - no advice as I have thy ca, but definetely get as much information as you can so you can make an informed decision. Best of luck

Candy - sorry about your son. Does he need glasses? Great news about the remission! Hope your dd is adjusting to her braces. As far as the synthroid, I take a large dose 200 to supress the cancer cellls. Its what has to be done but its ruining my bones. What is your dose? I only take the name brand synthroid which is $25 and my ins. wont pay for it as there are generics. I wont do the generic as the fillers have plus or minus tolerances and that is not good for cancer patients. I would see what the endo thinks for you.

Cheryl,Lisa,Marci and Smiley - hope you are all doing well

Cheryl - when is your dd done with the college program. Will she be there next week? Hope your taste and smell are improving

Laurie - hope things are not too stressful for you right now

OK, I slept till 10 am today. I went to bed at 1 am. I have been just so stressed out lately. Worse, I went to my meeting yesterday and things are really bad, so bad that I dont know what will be happening in the fall. I am glad the decision to keep the school open or closed will not be in my hands. Financially we need a miracle from God. A real miracle. The refrig. seems to be working thanks to ds21. I will have dh look at it later. I quickly kissed dh hello and goodbye and met the 3 chinese people and off they went.

My dizziness is not so bad, mostly its happening when I lay down and get up. I go next week for the hearing test and the ear specialist.

GTAGWTA.

 

[Pea-n-Me]

lmp, could your dizziness be from seasonal allergies? If a little bit of fluid gets in that inner ear, it can cause dizziness. I've had it happen many times even though I'm not typically "affected" by seasonal allergies (aside from the dizziness). My doc recommended dimetapp or other decongestant to help clear the fluid up, and sometimes it helps. I prefer claritin.

 

[luvmarypoppins]

lmp, could your dizziness be from seasonal allergies? If a little bit of fluid gets in that inner ear, it can cause dizziness. I've had it happen many times even though I'm not typically "affected" by seasonal allergies (aside from the dizziness). My doc recommended dimetapp or other decongestant to help clear the fluid up, and sometimes it helps. I prefer claritin.

I wish it was. It would be alot better than what is probably wrong with me for sure. I told my reg. ENT surgeon that after the dizziness I get a headache/pain right in the middle of my head. The ringing is almost constant. I always tune it out.The dr. I am seeing next week is some world famous guy, but I think its for cochlear implants. I would be happy if they would do a ct scan of my head. I was born without a R ear and the inside bones are fused together and the surgeon thinks something is wrong in my bad R ear and doesnt want anything happening to the L one since I only hear out of that one. As I said before, doctors just me, I am such a challenge to them.

 

[NHAnn]

GAGWTA ladies!

Belated mother's day greetings to all ... and to your own moms even if you are not one!

I've been thinking of you all SO much this past week. 6 years ago I found the original version of this thread......so lucky to have had Laurabelle and Pea-n-Me start the thread just as I was going through my annual mammogram callback, biopsy, and diagnosis whirlwind. Yesterday was 6 years from my diagnosis. DH sent 6 gorgeous pink-tipped roses to me at work "Happy cancerversary" to me. SO much support, info, love here, amid both laughter and tears here on this thread over the years.....from the "originators" as well as my dear hankie-dance buddy Snappy who has been here since then too as a mainstay and dear friend , MerryPoppins, and I could go on and on and of course hurt people's feelings by not mentioning them, so I'll stop and just say ALL the rest of you who have found your way here over the years. So blessed to have you in my life. And how great to have this still going on, as such a positive for the DIS community

My life which is HECTIC with work lately. Of the 5 of us who do what I do in my office , 1 left last week, 1 leaves at the end of the month, and 1 just went out of a 3 month maternity leave. I am trying very hard not to get stressed and to ease up my self-imposed high standards but it's tough.
Good think fishing season is upon us, DH won't let me work too much

Candy, I am on Synthroid, had started on it early 2009 the smallest dose (25) and last summer had a variety of things going on including extreme fatigue, my levels were off again and they upped the dosage to 50 which is still on the low end of what many people need for hypothyroid symptoms. It is considered a fairly benign as far as side effects generally speaking....I end up with side effects even from things that don't bother other people but I have nothing but positives about my experience on Sythroid.
Interesting about the brand vs. generic MaryAnn, my mail-order Rx had just changed from using generic to using the brand name Synthroid as their generic about a year in. When I was processing the Rx dosage change the doc said double up on the 25s until I was running low and then ordered the 50s change. I wanted to make sure I kept getting the brand name (since with other stuff going on at the time I didn't want to mess with a brand change)....but when the doc wrote "No substitutions", they said they had to charge me the brand name co-pay instead of the lower co-pay I'd been charged for the Synthroid because they were using Sythroid as a generic . He literally had to send a new prescription NOT saying "no substitutions".... So that I could keep getting the brand name they were using as generic, at the generic price.It still makes no sense to me just reading this over

I am trying to get in here to read and keep up, and think of you all every day even when I'm not posting!

My thought and prayers with all of you in treatment.

 

[wdw4us2]

Good morning, everyone.

I've been feeling okay after last Thursday and Friday's chemo. Although I had a reaction to the Carboplatin again on Friday, it wasn't too bad. I spent most of the weekend sleeping and am still not back to normal yet.

Feeling a bit down today. DH and DS are leaving in a few hours for Georgia and my brother's wedding. I am unable to make the trip - 11 hours in the car just doesn't seem wise to me right now. My brother and I are very close and I'm really upset about not being able to be a part of this special day for him. He and his fiance have arranged for me to see the wedding via Skype. After two years of dealing with this disease, I'm really starting to be annoyed about everything I'm missing out on because of it. I can deal with the treatment, pain, hair loss, weakness, etc., but the emotional toll is beginning to catch up with me. I just want it to be over with so I can get on with my life.

 

[CherylDan]

Lisa.... I'm sorry you can't be there for the wedding.

LMP...DD will still be there next week, her CP ends May 20. I was hoping to be able to go to WDW between chemo treatments and help her get moved back home, but I am just not up to it. So, DH will be going alone. Cancer sucks.

 

[Pea-n-Me]

Lisa, Cheryl You are in my thoughts and prayers.

Has anyone had hyperplasia and if so, what did you do? Did you go on tomoxafin for hyperplasia? If so, what has been your experience?

Annie, I meant to respond to this the other day. I have only one little experience but I will share it. A few years back I got a call from an old schoolmate who was a friend of a friend, etc. She'd just been diagnosed with invasive ductal carcinoma, ie breast cancer. She told me that a few years earlier she'd had the same type of thing you're talking about and that they'd recommended her going on tamox but she didn't want to so she didn't. She was remorseful about it and said she regretted the decision to not take it.

I do think that none of us have a crystal ball, unfortunately, and it is tough to make these decisions. I mean, you could go on it and have a blood clot or something and then say you wish you never took it, etc. Or you could be like my friend. I think you just have to gather all the information and make the best decision you can looking forward. Hindsight is always a lot easier than foresight. Good luck with your decision making.

Personally, knowing what I know today about breast cancer (and having the misfortune to get invasive cancer myself), I'd take my chances with the tamox. Because once you get breast cancer, the damage has already been done and you can't undo it. Having a preventative is a blessing that we enjoy today; women of decades past didn't even have that option. We are fortunate we have such great treatments available to us today. One could argue we should take advantage of them if we can. But that's JMO. I would learn all I can about it and then discuss concerns with the doctor. I believe the risks are fairly low, and many of the women here have been on it without much trouble IIR (or if they did have problems, they were minimal).

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Annie, I am glad the biopsy was OK. I don't know anyone on Tamoxifen, but I wish you peace in your decision.

Maryann, I hope you get something conclusive on the dizziness, and they can fix it!

Cheryl, I am sorry you won't be able to go help your DD move home. But I know she wants you to take care of yourself!

Lisa, I am sorry you won't be able to attend the wedding. I can only imagine how frustrating it must be.

Sending lots of hugs and good wishes to all of you!!

 

[Candy30]

Lisa- I am sorry you can't make the wedding. I think it is really cool that they are able to Skype you in. Keep getting better so these yucky type of days can be behind you.

NHAnne, LMP-Anne, You are going to look like this blue guy by the end of the month Try not to work too much. I am taking 75mg of Synthroid and my Endo put on the script no substitutions for the same reason as you Anne. I get every side effect there is listed on a medication. I have been getting bad headaches for about 2 hours after I take it. Then I am fine. I read this is a side effect. Did this happen to either one of you? Lmp I hope this new doctor can figure out what is causing that dizziness. I think maybe my son will need glasses...what a way to find out.

Ocean- Tough decision to make. Pray on it.

Cherly- Cancer does suck.

PNM-How's the pool situation coming?

Daughter stayed home from school because the braces hurt so bad. She cried on the phone to the ortho. He called to check on her. I felt so bad for her. She hasn't eaten much of anything since she got them on 3 days ago. I went out and bought her Pedialite shakes and mashed potatoes. I keep her drinking and try to find soft things for her to eat. I am a little nervous about her lack of eating. Hopefully this will subside soon.

GAGWTA

 

[Pea-n-Me]

Yesterday was 6 years from my diagnosis. DH sent 6 gorgeous pink-tipped roses to me at work "Happy cancerversary" to me.

That was SO sweet and thoughtful of your DH, Ann!

PNM-How's the pool situation coming?

Did I mention there were 3 problems? Well got a new liner in this week. (Major prob #1 brand new liner leaked. They said it happens 5 out of 100 times with new pools. Leave it to us. ) Got one minor issue taken care of. (Deck missing one piece, prob #2). And one left which will hopefully be resolved this week. (Resin deck had screw coming through panel, which the company will replace, prob #3.)

Despite it being cold and raw this week here, DD13 christened the pool yesterday. She jumped right into freezing cold water which had just been put in. It was almost painful to watch, lol. But she wanted to do it, and it was fun (for her!). I'm going to wait for a hot day! We have the electrician coming next week, we have to dig a trench for the wires this weekend.

I'm so glad we finally did it. It's something we've always wanted to do, as long as we've been here. I think the kids will have a lot of fun with their friends. I did get a large thermos for water, a trash can and a water cup dispenser to keep under the deck to minimize trips into the house for water. We also told the kids we're putting tablets in the pool so if anyone pees the water will turn purple around them! Not true, of course, but they don't have to know that!

I hope the braces feel better for your DD soon! That stinks!

 

[OceanAnnie]

Lisa, Cheryl You are in my thoughts and prayers.


Annie, I meant to respond to this the other day. I have only one little experience but I will share it. A few years back I got a call from an old schoolmate who was a friend of a friend, etc. She'd just been diagnosed with invasive ductal carcinoma, ie breast cancer. She told me that a few years earlier she'd had the same type of thing you're talking about and that they'd recommended her going on tamox but she didn't want to so she didn't. She was remorseful about it and said she regretted the decision to not take it.

I do think that none of us have a crystal ball, unfortunately, and it is tough to make these decisions. I mean, you could go on it and have a blood clot or something and then say you wish you never took it, etc. Or you could be like my friend. I think you just have to gather all the information and make the best decision you can looking forward. Hindsight is always a lot easier than foresight. Good luck with your decision making.

Personally, knowing what I know today about breast cancer (and having the misfortune to get invasive cancer myself), I'd take my chances with the tamox. Because once you get breast cancer, the damage has already been done and you can't undo it. Having a preventative is a blessing that we enjoy today; women of decades past didn't even have that option. We are fortunate we have such great treatments available to us today. One could argue we should take advantage of them if we can. But that's JMO. I would learn all I can about it and then discuss concerns with the doctor. I believe the risks are fairly low, and many of the women here have been on it without much trouble IIR (or if they did have problems, they were minimal).

That experience is an eye opener. I'm scared to do it and scared not to.

Your perspective is so right though. And I'm just going to read a bit more about it. My DH isn't so keen on it either. Mainly because he isn't keen on any medication unless it's absolutely necessary. He's like a pioneer man. And I love him. He'll come around to whatever I decide.

One day I'm for it, the next I'm definitely not. But those "not" days are not as many as the "for". So I guess in my own way, I'm coming to terms with it.
You know, you wouldn't think it would be such a big deal. But it's a change for me. Meeting my fears head on. In the past, I'd just say a prayer before going to get my mammogram and during the visit I'd hold my breath waiting for the results. And I'd practically run out of there afterwards. Running from my family history and my fears. Can't run now.

Thank you to everyone.

 

[Pea-n-Me]

One day I'm for it, the next I'm definitely not. But those "not" days are not as many as the "for". So I guess in my own way, I'm coming to terms with it.
You know, you wouldn't think it would be such a big deal. But it's a change for me. Meeting my fears head on. In the past, I'd just say a prayer before going to get my mammogram and during the visit I'd hold my breath waiting for the results. And I'd practically run out of there afterwards. Running from my family history and my fears. Can't run now.

I really think it's a blessing for you to have the option to prevent this. I wish I'd had it. All I know is that I found a lump one day, 11 months after a normal mammogram, and BAM, I was launched into a world that none of us wants to be in. Sure, none of us want to think about this, or take medications we don't want to take, but when reality hits you in the face you have no choice but to act.

 

[wdw4us2]

I really think it's a blessing for you to have the option to prevent this. I wish I'd had it. All I know is that I found a lump one day, 11 months after a normal mammogram, and BAM, I was launched into a world that none of us wants to be in. Sure, none of us want to think about this, or take medications we don't want to take, but when reality hits you in the face you have no choice but to act.

I couldn't have said it better myself, Pea!

 

[OceanAnnie]

I really think it's a blessing for you to have the option to prevent this. I wish I'd had it. All I know is that I found a lump one day, 11 months after a normal mammogram, and BAM, I was launched into a world that none of us wants to be in. Sure, none of us want to think about this, or take medications we don't want to take, but when reality hits you in the face you have no choice but to act.

You are right.

I feel bad posting about it on this thread. So many are going through real and very tough hardships. Mine is extremely minor in the scheme of things.

You are right. It is a blessing. I need to see it that way. Thanks for putting it in those words.

Thank you.

 

[wdw4us2]

Annie - You shouldn't feel bad for posting your feelings on this thread. Everyone here is dealing with something different and at different levels. It's scary no matter what it is. We're just here to offer each other support, so you have nothing to apologize for.

 

[smiley_face2]

Hi ladies! I had my second taxol yesterday. It's been good so far, no nausea to speak of, and I even have normal tastel buds. We skipped the Emend this time and so far no spasms, but both times before it was on the friday it hit, so I'll see tomorrow. I'm having some pain in my fingertips, right under the finger nails, quite sharp so I'm worried the effects are going to be cumulative and this being only 2 of 12, I might have to quit early which I really don't want to do. I am now completely hairless even my eyebrows. it's quite shocking, but also kind of nice not to have to deal with my hair.
Lisa, I am only coming up on 7 months now in my journey and I am already where you are with being sick of how much it controls your entire life. And emotions...my goodness, I have so many cranky days now I feel sorry for my hubby. sigh. We've had to cancel 2 trips to Disneyland now because of this, but I feel worse for you missing the wedding I'm glad they can have you there virtually!!
Peanme....yes I do meditate and it does help. I'm not consistent enough with it though. When I pray it's a type of meditation for me as well.
Candy, we've been through the braces, I feel your pain!! both financially, and your daughters pain. It's such an exciting day when they finally come off, and you can start saving for vacations again!!
Cheryl, you are right at the top of my prayer list! I hope things are not too difficult for you right now.
Oceanannie....I hear you on the medication thing. My dr. said to me "well you don't have to worry about side effects it you just put them in the cabinet along with all the others you won't take..." but I do feel you should at least try it. You can always stop if you feel it's not going well, but it sounds like it gives you a boost you can't afford not to at least try.
GAGWTA

 

[snappy]

Hi you guys!

Sorry so many here are struggling with treatment. Lisa. two years is a long time to be where you are. I can understand missing out on stuff. For me fatigue still rears its ugly head. I can pull myself together most of the time but not always. I had miss out on a stellar jazz fest weekend last weekend. But DH brought DS22 and went with my good friend Cindy and her sister and boyfriend. I really was deflated when DD20 and her boyfriend met them for a few hours too. It had turned into a family affair minus me and D15.

There will be more jazzfests in the future.

It is very different with your brother's wedding. I am glad you can view it live.

A bit of craziness here as always. It appears that Baton Rouge is in the eye of the Mississippi deluge. It is like we are sitting ducks and it is playing out slowly. We have levees but some maps are floating around (lol) that show us under water where we live (close to LSU). There is an upstream very large diversion spillway that is supposed to be opened Saturday or Sunday but the powers that be are waiting until the river flow gets to be 1.5 billion cubic feet per second (some requirement in their ever-loving rulebook).

I say go ahead already, set the exact time, there will be people affected that are not behind the levee in that area, but they need a drop dead date (don't really like that term here).

Apparently, it has come out they don't know if they will be able to close the spillway afterwards and that will mean a permanent diversion of the river away from both Baton Rouge and New Orleans which of course is a pretty serious econocmic problem as far as the shipping industry goes. It will also flood huge amounts of farmland and displace about 2500 people who built outside of levee protection, along with lots of fishing camps.

But if they don't open it, and there is a levee breach or the water rises above the levee, about 100,000 will be homeless.

Major flood stage here is 40 feet and we are at 43.4. Sounds like the crest is going to be on the 22nd, at maybe 47.5. Some parts of the levee aren't even that high, and of course have not be tested with this much water anyway, so they are making no promises.

I laid in supplies Tuesday, and need to start boxing up the stuff I can't replace, and papers we need.

There was a giant meeting last night where about 300 of our neighbors asked a lot of questions and got few answers.

I am more afraid that if they aren't sure if they can close it, do they really know if they can open it (last opened maybe 1973)?

Not sure if I am clueless as to the engineering of this or if there is an 800 gorilla in the room.

So we are going about preparing, as we are also doing feverishly at work, as one of the missions of my employer is emergency preparedness for people for disabilities and others.

I am glad I have a place to stay in Orlando as my whole family may be hanging out there.

Ah well, keeps me from getting bored. Never, never dull.

You know, we have flood insurance, not sure how many others here do. If you eve rlived in New Orleans you know those premiums are a good investment.

I just hope they don't send FEMA to the rescue.

MaryAnn, I am still coming to Orlando. We won't know the end of the story by the 19th. Maybe the rest of the family and the doggies will hop in the cars and come down.

We can have an evacuation party! Excellent place to evacuate to! Aways a silver lining.

 

[Pea-n-Me]

I feel bad posting about it on this thread. So many are going through real and very tough hardships. Mine is extremely minor in the scheme of things.

Don't be silly. We're here to support eachother through "all things breast"!!

 

[luvmarypoppins]

Good morning ladies

smiley - hope the side effects are bearable for you

Lisa - , so sorry that you cant be at the wedding, but I love the skype idea. It actually made me think of the Carousel of Progress. Technology has really come a long way for sure!

Cheryl - will your dd be at Cosmic Rays on the 20th?

Laurie - that is sure scary about the flooding. I hope you all make out ok. At least you have a warning to get things in order etc. Wishing you safety and all the best.

Anne - how was the easter dc trip for Avery?

I spent a great deal of time yest. getting statue of liberty tickets for dh and the 3 visitors to go on sunday. Found out some interesting facts. If you want to see the crown its about 6 months, photo id etc, then there is the monument, they issue 3,000 tickets a day for that and its sold out too at least from the NJ departure point. Then there is reserved, that is what they are getting, cant go into the pedestal museum etc. Oh well. Its the best we could do on last minute notice. I am not going, just them.

These people are being a pain, sorry. They refuse to eat the food, made dh go to a chinese grocery so far away to buy supplies, complained they needed "slippers" for the shower, Dh took them to Bed,Bath and Beyond. Told them he should have went to Target or Walmeart. They complained they wanted plastic/rubber soled ones. At the end, dh told them, look just go into the shower barefoot, that is what we do here. Um, my dh doesnt complain when he has to eat crickets,eel, sparrow that is in a net above his head in the restraunt and duck gonads etc.

I have been having tummy trouble, trying to eat yogurt etc. and then the dizziness. My appt. is Monday, cant come soon enough.

GTAGWTA. Hope everyone has a good week end.

 

[PatsMom]

My sincere sympathy to those struggling with their treatment choices right now. Some decisions are just so hard to make. I remember when I got the staging back for my cancer after the second surgery. The most conservative treatment is to do a radical cycstectomy which involves removing the bladder, uterus, part of the ******l wall and quite a few lymph nodes. They you have to select your choice of diversion, and not all will work depending on where your cancer is located.

Or at my stage and grade you could opt to take the risk of treating the cancer with immunotherapy. The treatments are tough and go on for five years with no guarantees that they will prevent recurrence. And if the cancer is even a little bit more invasive than originally thought, odds are that it will metastasize.

I did a lot of thinking and I am fighting to keep my bladder with the treatments. I did a lot of research on the risks and benefits of each approach. But I still sometimes second guess myself. If a get an odd pain in my abdomen, the thought of the cancer always crosses my mind.

I think in the end we just make the best decision we can based on the facts available to us and our doctor's recommendations.

Right now I am glad of the choice I made. I am between treatment rounds and a week from tomorrow I leave for the Beach Club!

My prayers are also with anyone who is in the area threatened by the flooding.