Dis Breast Cancer Survivors - GAGWTA!

[MinnieM3]

NHAnn... I have trouble sleeping often too and take Ambien. If it helps. do take it if you still have some. There's a new sleep aid out, too, called Lunesta I think. May talk to my doc about this at my next appt.

Keep up the positive thoughts.....try to think of something far off that will happen after all this is over. I was constantly saying stuff to myself like, Next Christmas I'll have hair, or next birthday will be so great, etc. It made the time seem not so "forever".

It's just a bump in the road. (said that to myself a lot, too.).

 

[Tiger Fan]

I cannot believe I was up ALL night (major sleep issues for me too right now) and did not see this thread again.

NHAnn - I am sitting here so sorry and upset about what you are going through, while still relating all the while. I hate to almost even speak up as I don't like for new survivors to even think about me as I seem like I am such a negative in that my cancer spread. You are honestly at a place with your diagnosis that you should NEVER have to deal with that!! I so hope this is the case. On the one hand they felt right away (I was a stage IIIB) that my cancer would spread almost immediately and my chances for survival were very slim, yet I'm still here OVER 5 years later - fighting on!! I know that can be inspirational to others, but I also know that when you read about my spreading that it makes you nervous. I get wierd sometimes about even speaking out to people and making them worry

Jenny, I know how hard it is to find others with similar experiences so please consider yourself very welcome here in our group!!

Lisa
Tiger Fan

 

[MerryPoppins]

But feeling somehow more postive in general!

I think that's the key. Thinking positive makes all the difference in the world!

Lisa, I think you are very brave and inspirational and I thought so when I was in the midst of my roughest days. We all know that there are different stages. Don't be afraid to share where you've been. Your strength of spirit in spite of obstacles is uplifting.

 

[Pea-n-Me]

Wow, you leave here for a little while and there's so much to catch up on!

All of your stories are so touching. I can relate to lots of things that you say. laurabelle, your story gave me a big lump in my throat, especially in describing how you were too numb to talk and your normally stoic father cried. My reaction to the news of my diagnosis was similar. I was so glad to hear "Dr God" was a nickname!! I was thinking you should have listed him on last week's Unfortunate Names thread, LOL.

Sleep was a huge problem for me last year too. My mind would race all night. Of course the chemo-induced menopause and the steroids didn't help. I'd feel like I"d drank about a dozen cups of coffee and be up and down half the night opening and closing the window with hot flashes. Many nights I'd just get up and write but come morning I was exhausted. Luckily once I was done with chemo it became less of a problem.

Minnie, we had a very similar time line. I also found my lump in late Sept of 2003, had surgery in November, began chemo late December and finished late April, and did radiation from May to late July. I also did the dose dense chemo every two weeks too, but I did A/C together and then taxol. My oncologist told me before I started she doubted I'd be able to continue to work through the dose dense regimen. I told her I wanted to work and otherwise keep my life as normal as possible (boy was I naive ) so she said if I wanted to I could try, but she didn't want me taking care of sick patients so I temporarily went into an educational role instead.

I continued to work through the A/C but by the time I got to taxol I really couldn't - for 36 hours several days after my first dose it felt as if all my nerves had gone haywire and were misfiring all over my body. I had shooting pains everywhere - first my foot, then my head, then my back, then my leg, arm, butt, you name it. (It reminded me of that Whack the Gopher arcade game, like someone was whacking me like that all over, uugghh). I couldn't believe I felt about 90 years old just trying to walk to the bathroom. I dreaded getting the rest of the doses but luckily only the third came close to being as hard as the first for me. On the day of the last dose I got to ring the ceremonial bell three times and all my caregivers gathered around and clapped. I stood there bawling like a complete fool it was so emotional. My chemo nurse and the NP on my team both are BC survivors, BTW , which was helpful to me.

Lisa, a special for you. I can imagine how you must feel in speaking about your case and being afraid to make others uncomfortable. I could see myself being the same way. But it's probably the case that any of our stories might very well make people uncomfortable. It's hard for them to relate. But any one of us could be in your shoes someday. We're here to talk about our experiences whatever they may be, and as we all know every case of breast cancer is unique and occasionally unpredictable. You can be comfortable here. I do find your story inspirational, and am really happy you're beating the odds.

NHAnn, I'm glad you're feeling better about things.

 

[Dan Murphy]

Minnie, your course was very similar to Marie's. She also had Adriamycin every other week, Taxol and Cytoxan, along with lumpectomy before the chemo, radiation, 30 treatments, following the chemo. She was staged at III at diagnosis, still surviving, 7 years later.

What a great bunch of fighters we have here, you are all such wonderful women, wonderful stories of courage, determination. And I like to mention Sylvia here too, trying to keep her memory alive, and as long as we do, she is a survivor also.

Keep up the good fight ladies, it is so very much worht it.

 

[laurabelle]

MinnieM3 - Your family has been through so much! Incredible. I bet it's made all of you closer in ways you never imagined! That chemo regime sounds tough! I did a clinical trial that was the "Gold Standard" at the time, 4 A/C every 3 weeks, then 4 Taxol every 3 weeks. They learned from my trial that dose dense is better (if you can handle it!) it kicked my butt, I don't think my body could have done dose dense! DIEP is a big surgery, but I've seen beautiful results from it!

Lisa - Please don't worry about scaring us with your story. It's important to know that no matter what stage you're dxed at, that there is hope! I agree with MerryPoppins, you're an inspiration! I've met alot of stage IV sistas, and you all continue to blow me away! So don't be afraid to share your story...

Linda- When I did Taxol, I spent alot of time soaking in the bathtub, doing visualization and guide imagery. I had a tape that I used, and you were supposed to imagine you were walking down a lovely grassy path by a stream. Well my legs hurt so bad, I couldn't even imagine walking, so I imagined floating down that path!
I still live with residual effects of Taxol. My fingertips are still numb, not as bad as during tx, but still, not what they should be. And my fingers aren't as nimble, my fine motor skills stink. And when it's cold outside, forget it, my fingers are useless. But hey, I'm here!!!

Ann- Keep up the positive attitude! It's a great weapon!

((((((((hugs to all))))))))))))

 

[JennyMominRI]

I was wondering if any of you take Zofran? It a drug to help with chemo symtoms and is given to AIDS patients..I take it for nausea.
Strangeley enough AZT was originally designed as a drug to treat cancer..It was considered too harsh,,but has been used in AIDS patients for years

 

[laurabelle]

Jenny,
Zofran was the newest, latest, greatest anti-nausea drug out there when I did chemo 6yrs ago. Unfortunately it didn't work for me. I was really sick on the first 1/2 of my cocktail, A/C, and ended up back in the hospital the day after every treatment to get I.V. everything (ativan, decadron, zofran, fluids...) and I'd still vomit on the car ride home. I go to a university hospital and they had a pharmacy study follow me. They said it wouldn't help me, but would be helpful to future patients who nothing worked for. Well now they have a newer anti-nausea drug called Emend that is supposed to be the best. Zofran still works great for alot of people, but if it ever stops working for you, there is something else out there now!

That doesn't surprise me about the AZT, it seems like so many drugs they make for one disease end up working for another...not sure how they find that out though. How are the side effects?

 

[Pea-n-Me]

Jenny, usually with each dose of chemo you receive an IV antiemetic like zofran. I forget the name of what they used on me, it was supposedly stronger than zofran. All I know is that it worked very well. My stomach felt "off" and "blah" throughout chemo, but I never once had nausea or vomiting. They sent me home after each dose of chemo with a strict regimen of things to take at certain times such as oral zofran, compazine and ativan. I followed it to the letter and I think that's why I was fine.

laura, funny about "floating" down the garden path!! Absolutely, floating would have been what I would have done too!!

I also learned visualization and relaxation techniques at my support center and used them frequently at home and with each dose of chemo and radiation. Being a hospital nurse and even giving it myself in the past, I was very afraid to receive chemo (that was for sick people, LOL). But I learned to think of it as a "positive" rather than a "negative", a healing energy wrapped in light and flowing in and zapping any renegade cancer cells in my body. We even put a humorous twist on it in light of my kids and my love of Disney - I pictured Buzz Lightyear doing the zapping! I also mentally took myself out of that room and instead was on the top deck of the Disney Wonder!! I visualized the sights, smells, sounds, tastes (yum, pina coladas) and feel of the sun I would enjoy when we made it back on the ship at the end of the summer. Pretty handy, I'm so thankful I found that support center, I don't think I would have done it on my own.

Recently I had to put one of my beloved German Shepherds to sleep. I was having a really hard time bringing myself to do it. He was half of a brother/sister pair I'd had for 13 years. My precious female had gotten suddenly sick and I had to put her to sleep unexpectedly the same day I lost all my hair (of all days). That became one of the hardest days when I look back at the whole experience. Between the dog and the hair I was completely traumatized and sobbed nonstop all night long. (In retrospect I think that was when all the feelings I was holding in so as to be "strong" came out). At any rate, it came time to put the other dog to sleep and as circumstances were I had to do it alone. Remembering my visualization techniques, after they gave him a sedative and he was asleep, I went over to the window in the room and looked at the garden outside. I could hear them working on him but in my head I pictured him running at the Rainbow Bridge and told him to run (he had lost his ability to walk). When it was over I was fine - so different than with the other dog thanks to the visualization. I've been able to teach the techniques to some of my patients now and find them handy to use in everyday life just to relax.

 

[Mskanga]

Ladies , you are all such an inspiration.....one of my friend's is going through breast cancer treatment now and it's kind of hard to see her go through this , she's a single mom of 3. She gets treatments every two weeks and she's still insisting on driving herself. She's a very reserved person so it's kind of hard to get something out of her but I keep checking up on her making sure she knows I am here to help.
I am glad that you ladies have found each other for support and to educate other people with your own experiences. For all of you going through this right now , my very best wishes go out to you and stay possitive , it's the only way to overcome all the obstacles.
I have been fortunate to not have breast cancer in my family and I hope I never experience it , but if I ever do , I hope I can be as strong as you all are.

 

[laurabelle]

Has anyone here had it done? My onc asked me about it when I was dxed, simply because of my age. I didn't think I had any relatives with cancer, at least that's what I was told, and I didn't think mine was hereditary. I have a good friend who quit her veterinary practice to become a full time advocate for genetic testing. She and I spoke at length about it, and I felt at the time the testing wasn't necessary for me. Well, during my last 6 month check up, my onc brought it up again. Again I told her I didn't have a family history, but she said genes can spontaniously mutate and again, because I was dxed at a young age, I was a good candidate for the test, even without a family history. So I told her I'd think about it...well I called and made an appt. with a genetic counselor, then called my mom to ask her one more time if anyone had any cancer in the family and guess what? She gave me a list on both sides of people with different cancers, including bc on both sides. I was floored. She said some of it she just found out within the last couple of years (our extended family is not close) and I don't think my mom was trying to withhold information from me, but it never occured to her that it might be important to me. It would have been nice to know this 6 yrs ago when I was dxed. So I go next week to meet with the counselor and have the testing done...
Here's my friend's website if anyone is interested in getting more information.
F.O.R.C.E.

 

[laurabelle]

Ladies , you are all such an inspiration.....one of my friend's is going through breast cancer treatment now and it's kind of hard to see her go through this , she's a single mom of 3. She gets treatments every two weeks and she's still insisting on driving herself. She's a very reserved person so it's kind of hard to get something out of her but I keep checking up on her making sure she knows I am here to help.
I am glad that you ladies have found each other for support and to educate other people with your own experiences. For all of you going through this right now , my very best wishes go out to you and stay possitive , it's the only way to overcome all the obstacles.
I have been fortunate to not have breast cancer in my family and I hope I never experience it , but if I ever do , I hope I can be as strong as you all are.

Thank you!
Just being there for your friend if she needs you means alot...continue letting her know you're there for her. If she won't let you do something for her, maybe you can do something for her kids...

 

[laurabelle]

Linda, over the years I've gotten really good at imagining I'm somewhere else during medical procedures. Back when I was doing chemo, my kids were into the Veggie Tales videos. They're silly little stories using vegetables as the characters, based on Bible stories. One of them is Dave and the Giant Pickle, based on David and Goliath. So my chemo visual was that I was Dave and my cancer was the giant pickle, and the chemo was eating away at it! I also did more serious forms of meditative prayer and visualization too. It really helped to calm me. I never could read or watch t.v. (though it was ususally on in the background) during chemo, so I would bring my relaxation tapes and go to sleep...

 

[snappy]

I used contemporary spiritual music via headphones while sitting the surgeon's
waiting for my turn (sometimes this seemed like an eternity), during my surgery, and anytime afterwards that I needed a lift. I found it very soothing and that it helped me actually lose track of time. I credit this music along with prayers (mine and others') for my recovery so far.

Now my favorite mass at our church is the Sunday night youth mass where the youth choir often sings some of these same songs. After that mass I feel very relaxed.

When I had the stereotactic biopsy April, 2004, when my journey started, I remember there was a stereo playing music softly beside the table. Between the music, the nurse whose only duty seemed to be to stay next to me and hold my hand, rub my back and make sure I had a heated blanket, I actually have a good memory of that day.

 

[JennyMominRI]

Jenny,
Zofran was the newest, latest, greatest anti-nausea drug out there when I did chemo 6yrs ago. Unfortunately it didn't work for me. I was really sick on the first 1/2 of my cocktail, A/C, and ended up back in the hospital the day after every treatment to get I.V. everything (ativan, decadron, zofran, fluids...) and I'd still vomit on the car ride home. I go to a university hospital and they had a pharmacy study follow me. They said it wouldn't help me, but would be helpful to future patients who nothing worked for. Well now they have a newer anti-nausea drug called Emend that is supposed to be the best. Zofran still works great for alot of people, but if it ever stops working for you, there is something else out there now!

That doesn't surprise me about the AZT, it seems like so many drugs they make for one disease end up working for another...not sure how they find that out though. How are the side effects?

AZT is horrible and deadly.. It causes permamant dame to more organs than I can count.. Back in the early days they were giving massive doses that they now believe killed as many as they saved... I refused AZT for years.. Now it's gven in much smaller doses and isn't quite as toxic.I take Combivir which is AZT and D4t Combined..My AZT use is possibly linked to my cardiomyopathy and peripheral neuropathy.

 

[JennyMominRI]

Jenny,
Zofran was the newest, latest, greatest anti-nausea drug out there when I did chemo 6yrs ago. Unfortunately it didn't work for me. I was really sick on the first 1/2 of my cocktail, A/C, and ended up back in the hospital the day after every treatment to get I.V. everything (ativan, decadron, zofran, fluids...) and I'd still vomit on the car ride home. I go to a university hospital and they had a pharmacy study follow me. They said it wouldn't help me, but would be helpful to future patients who nothing worked for. Well now they have a newer anti-nausea drug called Emend that is supposed to be the best. Zofran still works great for alot of people, but if it ever stops working for you, there is something else out there now!

That doesn't surprise me about the AZT, it seems like so many drugs they make for one disease end up working for another...not sure how they find that out though. How are the side effects?

AZT is horrible and deadly.. It causes permamant dame to more organs than I can count.. Back in the early days they were giving massive doses that they now believe killed as many as they saved... I refused AZT for years.. Now it's gven in much smaller doses and isn't quite as toxic.I take Combivir which is AZT and D4t Combined..My AZT use is possibly linked to my cardiomyopathy and peripheral neuropathy. SInce so many people with AIDS get different types of cancers,maybe they discovered that it helped AIDS patients by accident

 

[Cruise04]

laurabelle - my gyn suggested genetic testing because of the many cancers I have in my family - BC, colon, possibly ovarian, and lung (yes, sometimes I feel like I'm a time bomb just ticking and waiting to go off).

I'm going to look at your friends site. I didn't follow through with it (this was two years ago) because I was afraid of what I'd find out. I may talk to her about it more on my appointment on Monday. Thanks for that link.

 

[laurabelle]

AZT is horrible and deadly.. It causes permamant dame to more organs than I can count.. Back in the early days they were giving massive doses that they now believe killed as many as they saved... I refused AZT for years.. Now it's gven in much smaller doses and isn't quite as toxic.I take Combivir which is AZT and D4t Combined..My AZT use is possibly linked to my cardiomyopathy and peripheral neuropathy. SInce so many people with AIDS get different types of cancers,maybe they discovered that it helped AIDS patients by accident

Jenny, (the million question post!)
That sounds so similar to two of the chemo drugs I got. Adriamycin can cause heart toxicity and Taxol can cause neuropathy. So far my heart is ok, I do have some neuropathy problems, but it's not bad.

How often do you you get your cocktail? Is it an infusion? How do they follow your progress? And are they doing MUGA scans for your heart? Does your hospital treat you well? I was just thinking about an article I read about a cancer center in Syracuse NY that does a great job of working with patients holistically. They can get a massage before their infusion, meet with a nutritionist, take yoga, ect... it sounded heavenly. I wish my hospital did that! Every hospital should!

 

[laurabelle]

laurabelle - my gyn suggested genetic testing because of the many cancers I have in my family - BC, colon, possibly ovarian, and lung (yes, sometimes I feel like I'm a time bomb just ticking and waiting to go off).

I'm going to look at your friends site. I didn't follow through with it (this was two years ago) because I was afraid of what I'd find out. I may talk to her about it more on my appointment on Monday. Thanks for that link.

Have you had bc? You don't have to have had it to get tested, but it's good for one of the people who has bc in the family to be tested if they are so inclined. Before you even get the test, you're required to meet with a genetic counselor for a lengthy, informative appt. They go over your family history, explain the genes they can identify, the limitations of the test, the implications, give you their recomendations ect. Sue has done a fabulous job running F.O.R.C.E., she's an amazing person. If you post on the message boards, tell her Laura from SIS sent you! Good luck with whatever you decide!

 

[NHAnn]

Hi all...
TGIF!

I've been thinking and reading all week...and up and down....( and I remember why I do NOT like roller coasters- emotional or otherwise!! ) talking to people, asking questions....

Right now I'm thinking I will have the re-excision and then radiation (assuming they can get clear margins on the re-excision and find nothing different)...

Actually had a decent night's sleep last night....and have been 96 hours since my last 1 mg of estradiol ...with nary a hot flash (knock on wood)

have a great weekend...and thanks for being here for me this week!