New to this board

[Leslie's sister]

Hello everyone.

I'm new to this board. I have been reading your posts for about a month now and have really learned a lot.. Thank you so much. My name is Lisa. My younger sister, Leslie, was diagnosed with breast cancer in May 06. It has been a life-altering event to say the least. I'm still devastated about her diagnosis and have spent countless hours researching breast cancer and treatment options for her. She is Stage II, Her2Neu+++, ER-, PR-, and 1 positive node. I can't explain how hard it was to read her pathology report and read the words unfavorable after almost every marker. But then we learned about Herceptin and that is the medical hope that we hang on to. I have told her about your site but she can't bear to read much about her cancer so she relies on me for information. Which brings me to my questions. She is struggling so much right now emotionally and has been for about a month. She started on Ativan and she called it the "I don't care" drug. It worked for a while but then she started feeling more and more anxious and attributed it to the Ativan. She had heard from someone else with cancer that Zoloft was a good drug. So about a week and a half after her 2nd chemo treatment, she stopped Ativan cold turkey and started Zoloft, hoping to end the anxious feelings that she was having. Well within 24 hours she was sick. For about a week she felt bad. We figured out that quitting Ativan cold turkey was not good because it works for nausea as well. Also she had Zofran but was not taking it. She has started that now as well. Anyhow, she feels better now and just had her 3rd chemo on Wed. We are praying that she will fare better this time. Question #1- is anyone on Zoloft and if so how long before you could feel the effects of it? She has been on it two weeks and feels no different. She feels hopeless in the morning as well as anxious and depressed. Towards the end of the day she pulls out of it only to start the entire process over again the next day. (She still takes Ativan, along with Zoloft)
Question #2-Does each chemo treatment get progressively harder or should she level out? (Her Chemo is TCH) She did so well after chemo treatment #1 but #2 was awful.

Lastly, Leslie is so sad and I want more than anything for her to feel hope again. She is so worried about leaving her children 16 and 12. I hate to see her hurting as much as she does. She cries everyday. I want to do everything to help her I can. I have been to every doctor's appointment, every chemo treatment, handled insurance approvals. I have done everything I can think of. I am on the Internet at least an hour every day researching. I don't want to miss anything that might help her, cure her. She has a strong love of the Lord but isn't leaning on Him like she normally would. She has isolated herself from everyone other than her immediate family. She loves being involved with her children's activities but she can't bear to face people and answer questions. She hates that she has lost her hair and esp. doesn't want to face people she knows other than immediate family in a wig so her depression gets worse because she chooses not to do the things that she used to enjoy doing. Did anyone get this low emotionally and if so how can I help her? If you are on Zoloft do you think that is enough for her level of depression?
I’m sorry this is so long. Thank you all again for such a wonderful site

[tousled1]

How lucky she is to have a sister like you! Feeling the way she does is quite normal. When you receive the diagnosis of breast cancer it does something to you both physically, mentally, and emotionally. Ativan will help with her anxiety and also will help a little if she is nauseated. I know each roud of chemo I felt different - sometimes on side effects and sometimes lots of effects. Being HER2 is not the end of the world. Herceptin is a wonderful drug and most women take it for one year. I know that there are long time survivors on this board who can offer more insight. As for losing her hair - it is traumatic. Try making it fun. You can always get different styles and colors of wigs. I myself wore my wig about 2 times. I much prefered to wear hats. My hair has started growing back and it might be 1/2 inch now. I no longer even wear a hat. Please try and get your sister to have a positive outlook (I know that's hard) and also if she was religious she may find some great comfort in her religion. My thoughts and prayers are with you.

[newgg]

Greetings Lisa,

Wonderful that you are there for your sister. You have come to the right place....for the facts and support that will help. You can use all those facts and prayers for the power and punch she will need to FIGHT this mess. Bunch of Warriors Women here that will lovingly share all the tools you need....diet, lab reports, new meds, etc....and prayers.

Yes, the chemo does get worse with each dose. That is a fact for most of us. BUT ...when it is done you do climb out of that hole. Talk to the oncology nurse team and the doctor....keep a list, a note book and copies of every thing. If one med does not work.....there are so many others. The nurses work directly with the patients each day and know more about what works and the different meds she can try. You have already learned that stopping some meds cold turkey does not work. It is OK to listen to your body and be a couch potato on those days you need to rest. It is OK to cry your heart out ....like in the shower ....and wash them down the drain and get ready to FIGHT. Heck, just plan a 10 minute whine, moan and pity time for each day....and say.....OK...done with that.....some one with better math skills could tell you there are now tons of minutes to breath in and out, smell the flowers and listen to the music of those laughing kids. Use the chemicals necessary to FIGHT. It is OK to be angry with HIM about this but then you realize that you need HIS strength and loving support for this FIGHT ! Her faith is still there ....waiting for her to give it over to HIM.

Emotionally is such a rough time for her right now. Please continue to try to help her get out and about.....even with a baby step of 5 mintues out. There are groups that can help with make up, wigs and hats and such. Many of us get several hats, fun wigs, what ever it takes. Is there a b/c suvivor in her church that could help?

HUGS, Bonnie

[Mary Jo]

Hi Leslia's sister Lisa,

Me and your sister sound like we had the exact same diagnosis and treatment. I can so relate to how she feels. I, too, was diagnosed at Stage 2. My tumor was also large and I had 1 lymph node with a microscopic cell in it. I had one breast removed July of 2005 and the other breast removed (precautionary measures because I had a calcification in that breast - all benign thank God) -March of 2006. Also, I was ER/PR neg. and Her2 pos. Tumor was grade 3.

Thankfully we have herceptin. I look at it as the miracle drug. Chemo is tolerable and taking your antinausea meds is a MUST whether you are nauseated or not.

I'd love to communicate with your sister if she'd like to communicate with me. I'd love to encourage her and be their for her. I, too, am close to our Lord and would love to befriend her as a sister in Christ and a breast cancer sister.

My e-mail address is mcyr@charter.net and I hope and pray to here from her.

Love in Jesus,

MaryJo - (age 46) finished chemo Nov. 30, 2005 - finished radiation Feb. 2006 - will finish my one year of herceptin on Oct. 11, 2006. I am trusting the Lord for complete healing.

[Leslie's sister]

I so appreciate the thoughtful, encouraging responses for Leslie.

Kate- She has beautiful wigs and is a strikingly beautiful woman- believe me she looks awesome. She is just so self concious in them. She was able to go to a big family wedding last weekend that I NEVER thought that she would attend and she realized that it was not as hard as she had thought. I'm praying that as her children's school year gets underway, she is able to grow more comfortable with doing things. You are so right about being Her2Neu. It is not the end of the world. Her onc said it perfectly. "The bad news is that you are Her2Neu Positive. The good news is that you are Her2Neu Positive". With Herceptin that is so right.

Bonnie, thank you for your words of wisdom regarding tears, anger and turning it over to Our Lord. She will. As she has said about everything so far, "I keep fighting the next step and the Lord keeps saying, Just step out of the boat Leslie and trust Me."

MaryJo- She has voiced a desire in the past to communicate with someone that has her exact diagnosis. You sound like the answer to prayer. I am going to pass your information on to her. Hopefully she will take the opportunity to correspond with you via email.

One thing that I did not share about Leslie that I know has something to do with her struggles. Her husband was diagnosed with Metstatic Prostate Cancer in April 05. He lost his battle in Nov 05. She was diagnosed with Breast Cancer 6 months later. Her and her children has had more than their share of sadness.

Ladies, again, thank you all. You are a great group of women. I will keep all of you in my prayers!

[juanita]

I take zoloft and it can take a couple of weeks for it to work. I think i was originally told to take it at night, but had to switch to the morning. Your sister is very lucky to have you. Just keep being there for her even if she starts withdrawing. Things will get better. At first I didn't want to know anything about mine, or anyone else's cancer, then I decided that the best weapon against cancer was knowledge. I read everything that I could get my hands on. Even stuff that was older. I'm sure that any of the women on this site would agree that your sister could e-mail any one of us personally if she wants to.

[rinaina]

Leslie is so fortunate to have you for a sister. I commend you for stepping up to the plate and being her #1 supporter, researcher and confidant. Everyone on this board has been where you sister is at. When I first got my diagnosis I was shocked and dismayed. I prided myself on always taking such good care of myself and staying in good shape. I went for yearly mammograms from the age of 40. I never thought, as we all do, that this would happen to me. Well it did and in the beginning there is so much to digest. Everyone is different and handles things different. Believe me, it is not that I am so strong, but I learned early on that attitude can effect your outcome, so I decided that I would force myself to remain positive. That's not to say that I didn't have my moments, and I did allow myself time to be upset and to cry. I just didn't allow it to take over my life. I realize easier said than done...not everyone is strong enough but if you could encourage your sister to try to remain positive because it really can make a difference in her prognosis or encourage her to seek professional help that would be great. We can't all do it alone and you alone can't do it all. I would be happy to talk to her as well. I can understand every emotion and feeling she has had and will have. It isn't easy and even now that I have completed chemo and have just started Herceptin and about to start radiation, I still sometimes get down. Only normal, but I won't let it consume me or my life. I will fight this beast with everything I have in me because I want to live for my children, my husband and most important for me. My chemo did get worse with each treatment but I made it through all the side effects, and I had plenty, and now I am feeling almost back to normal. Do I like that I lost my hair, of course not, who does, but it is temporary and it doesn't change who you are. Please feel free to pass my info along to your sister, I would be happy to talk to her. Would be good for her to talk too so she could hear how well someone is doing after just completing chemo. I am here if needed.

[Linda]

Hi Lisa;
Your sister is dealing with so much grief and loss right now, as well as the physical challenge of chemo, plus pre chemo steroids (which really throw you around emotionally -- have her talk to the nurses about that,) and the fear that this diagnosis brings.
I am also ER/PR-, Her +, 6cm and 1pos node, so similar to her, if not a little worse. I was dx in May, 05 and am now NED, back to running, weight lifting and working hard, and still trying to keep my head and emotions together. I also have kids and actually felt secure enough to let my 17 year old daughter go away for a year of study abroad -- so, treatment does end and life does go on.
But I can't imagine the loss she must feel so soon after what happened with her husband, and the fear for her kids. You can and obviously are helping. A support group might also be good, plus all the loving friends that can rally. You can pm me also, along with so many other loving and generous women on these boards -- if you think she'd like to email someone directly. I'm originally from so cal and went there for my surgery.
Hang in there, and be there for her in the long haul.
Linda

[chrisy]

Dear Leslie's sister Lisa,
You are lucky to have each other - there is nobody like a sister. Except maybe a BC sister, of which there are many here as well as OUT IN THE WORLD living life to the fullest after surviving breast cancer diagnoses. Picture Leslie in this way! There is SO MUCH HOPE - and my prayer for Leslie is that she will begin to see that.

It is completely understandable and natural to be afraid, even paralyzed with fear, especially with concern for the kids who have so recently lost their father. That alone would be a lot to bear, even without the "new" challenge of fighting breast cancer. I might even wonder how a loving God could allow these things to happen, and I think He would be ok with that.

Although Leslie's husband lost his battle with cancer, that does not mean the same will happen with Leslie. She does not have evidence of metastatic disease and that is GOOD news! There is every reason to believe that Leslie can defeat this cancer. Getting chemo is not fun, but it is doable and with treatment, there is a very good chance of beating it back for good.

Re question #2 - does chemo get worse? I also had TCH and I was told that your first treatment is indicative of how you will respond to remaining cycles. This was true for me. I had weekly TCH for 3 weeks then 1 week Herceptin only. 6 cycles of this. I had antiemetics in my premeds - Aloxi and I think Zantac and never had any nausea problems. If Leslie is experiencing nausea, talk to the chemo nurses about this, they may be able to change her premeds to help prevent it. Also make sure she takes the Zofran or Ativan at the first sign of problems. It's much tougher to defeat nausea once you have it.

I also did NOT find that each chemo got worse. Each chemo was the same. What got worse was that I had mild fatigue that got progressively worse with the cumulative doses - and my WBC and RBC counts did not rebound as high as the week before. Sort of like watching a ball bounce and each bounce has a little less altitude. Then on my Herceptin only weeks, it would rebound "better". After the 6 cycles of TCH, Herceptin alone was a breeze.

Everyone reacts differently to chemo, this was just my experience.

You're a great sister, thanks for holding Leslie up until she can feel hopeful again. One foot in front of the other.

Take care,
Chris

[Bev]

Hi there, I'm stage 2, ER+ PR+. So not exactly the same. It is an emotional roller coaster. I completed my AC and T & H and am almost done with Herceptin only. I asked for zoloft 2 weeks ago. I have anxiety attacks over all the medical testing. It reached a head over rads. Somehow I think anxiety has a root in hormones, but once it starts it's in your mind.

Someone posted that Effexor is very effective. Onc said Ativan is part of chemo pre-med. She also gave me a script for that. It is addictive and doesn't mix with driving. Doc said to use only when really needed. But I do know someone who does it daily and drives. She may really need it everyday.

Your sis sounds overly sad, don't know how long since she's been diagnosed. I know I was a wreck for a few months. Hang in there it gets better.

Onc nurse said if you tolerate one treatment well you are likely to continue that. Fatigue grew with time but severity of reaction did not.

I had the wierd wig avoidance thing too. I just didn't want casual aquaintances to feel sorry for me or speculate on what I might have done to deserve this. Now I'm being weird about people seeing me in my new short hair.

Get your sis onboard to vent. It will help. I haven't done it, but a local support group may help. Cancer sucks, but she still has a decent prognosis, no guarantees. I think about it everyday, but haven't cried lately.

Really, one day at a time and you'll get thru this. It won't be pleasant, but it is do-able. Best wishes, Bev

[Leslie's sister]

Ladies thanks again for the additional responses. You are an awesome support group.

Juanita- why did you have to switch to taking Zofran in the mornings rather than the evenings? I so agree with you about the best weapon against cancer being knowledge. That has been my weapon of choice since day 1 (well maybe day 2, day 1 was pretty tough). Leslie lets me do the research probably because of her fear. I have promised her never to keep anything from her so this arrangement (me researching and advising her is working for now)

Rinaina- Thanks for your kind words. I definitely agree with you on remaining positive I continually tell her how optimistic I am in terms of her prognosis and what I’ve read on the Internet. I know she is listening because she will repeat things that I’ve told her in later conversations.

Linda- you are so very similar to her including month of diagnosis (a year earlier). It is so uplifting to hear that you are back running and lifting weights. I am going to pass that information on to her as well. I have given her Maryjo’s email address and I’m praying that she makes contact with her. Possibly she will want to contact you as well. I will be in touch if she does.

Chrisy- Yes, I have questioned God at length about allowing this to happen to Leslie and her family again and so soon after the loss of her husband/the children’s father. Early on when I was really questioning God, Leslie wrote me an encouraging letter and quoted James 1:2 Consider it pure joy brothers when you face trials……. At that point I had to stop questioning, being angry etc and start encouraging her which was perfect timing really because after chemo started she needed me always to be encouraging. You seem to be encouraging as well, responding so frequently to others. Bless you! And yes we have learned the hard way-don’t chase nausea.

Bev-I will check out Effexor. I worry a little about the Ativan but since she reacted so violently when she stopped it, I figure that we can just face the quitting stage after her last chemo (which is late Oct. Yippee!) She looks so beautiful in her wig(s) (she bought like 4 of them) and will wear them around immediate family and people she doesn’t know. She just can’t bear to wear them around the rest of her circle. I have so learned not to pressure her to do things. In time I think that she will relax and go out into the world. It sounds like it is going to be a while before her hair is at a length that is acceptable for her anyway. I can’t imagine her missing out on life once chemo stops and she is feeling better. I’m going to continue to “suggest” that she come online and “vent”. I believe that she will get there. She is so frightened right now of disease progression, sad endings etc. Even to read one sad story just sends her in a tailspin.

Again, I can’t thank all of you enough. You are all wonderful. God Bless

[mts]

Lisa,

I have been on Effexor since the 3rd week of chemo (1/05)... it is given to breast cancer patients for the relief of hot flashes. It's normally used for depression/anxiety. I accidentaly went off the Effexor once when I failed to pick-up my prescription at the drug store. Big mistake. I had horrid dizziness and could barely drive. After I went to the onc thinking I had some brain tumor, the onc nurse asked me about my Effexor and figured out it was the culprit. Once I got back on it, I was fine. I know now never to quit it cold turkey. I take 32.5 mg (the usual dose is 75mg) and sometimes higher. Getting the hot flashes to go away was huge for me. I don't have that "exasperated" feeling anymore, I don't know if it has affected me psychologically or just the fact that no flashes makes me not think about my cancer... either way, I am happy with the result. I sleep at night!
I envy your relationship with your sister- I have one that lives 3 blocks away and has only called me once since my diagnosis 2 yrs ago. Fortunately, I have an awesome husband and support from his side of the family and good friends...
I hope things work out for your sister. Chemo does a number on your body and brain. Hopefully her mood will improve once she realizes that everything possible is being done for her. My best wishes to both of you.

Maria (MTS)

[Mgarr]

Lisa,


I had the same diagnosis as your sister at age 39 in December 2004 I was sure I would never make my 40th bday. I cried night and day for weeks, my husband was very concerned and there was always someone with me whether I wanted them or not. I am not big on medication so I sought out the breast care social worker and did lots of talking, crying and guided imagery. She constantly reminded me that my emotions are completely normal with this life changing diagnosis. It truly is a grieving process and your sister will be come thru it stronger & wiser. She is blessed to have a sister like you and I will keep her in my prayers. You have come to the right place for information, understanding, love & prayers.

Here is my email as well.

mpgarret@umd.umich.edu

Mary

[Linda]

Lisa:
Do pm me if you think it might help, and I'll send my email address. I'm doing well and can share a lot of positive support.
L

[sarah]

Dear Lisa,
Leslie's lucky to have a wonderful sister like you. I agree with others that she should get on board on this site and vent and whatever, it will help her.
Reading books which just take you away from yourself really helped add still help me - tv is a negative influence. movies are good also. I hope she will get into a little social interaction also even though she'll be tired.
She's at an early stage and I'm sure the doctors have told her there's no reason she shouldn't see those kids grow up.
Stay strong yourself and don't get too worn out. It's not easy being the care-giver and we sometimes forget to tell our care givers how wonderful they are and how grateful we are to have them. she should join a local support group - I'm sure there's one at the hospital. Also this is going to sound stupid but tell her to put on a fake smile - it does something chemically within the body - try it and enough times and you'll feel it, it's weird and won't change it completely but helps the stages to feeling better. laughing is even better.
all the best for your sister,
sarah

[SusanV]

Lisa,

I was just recently DX (August 3rd) and have done my share of crying and not sleeping. I am currently taking Ativan (as needed) and PAXIL before bedtime. I am starting my chemo next week, so I am no authority on that subject yet, but what I can offer is that in these last few weeks of dismay, what has helped me is purpose....One neighbor asked me to take care of a new puppy for three days..the distraction and need to care for something else was great. I also have small children 6 & 9, so I worry about them constantly. Make sure you notify the childrens teachers and principal about what is going on at home. If the kids experience any difficulty or change in behavior in school it will help that the faculty is in the loop. I know the principal at my childrens school was very receptive to keeping tabs on my children as they begin school.

I don't know if your sister likes animals, but my beloved golden retreiver gives me a lot of comfort. My dog actually works doing pet therapy 1 x /month at a veterans center. They say petting a dog reduces stress and lowers blood pressure. While taking on a new pet would be too much right now, perhaps a visit from a neighbors pet might help. And finally, my brother has accompanied me to all of my appointments, and I sent him a card recently to tell him how much I value his friendship. Stay close to your sister...and try to arrange fun things for her children to do with neighbors or other relatives to give her some breaks.

Love

Susan V in PA

[chrisy]

Lisa,

My sister lives 2000 miles away, and was not really able to be "here" for me (although I knew she was "there" for me!). I put her in charge of making me laugh - and she responded by constantly sending me funny things and funny DVD's. You're lucky enough to be there in person; but laughing is a GOOD thing both mentally and physically. Boosts the spirits as well as the immune system.

Maybe some 3 stooges for those chemo sessions!

I hope your sister begins to feel better soon - in the meantime, just keep her wrapped in your love and maybe give her a little tickle!

Take care
Chris