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Newcomers Club / Welcome Wagon With the stellar results of the adjuvant clinical trials of Herceptin, we have had many newly diagnosed patients visiting the HER2 Support Group. This Forum is just for them to post. "Old Timers" should only answer existing posts, but not create new

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Old 04-03-2007, 05:28 AM   #1
Caroline UK
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Join Date: Nov 2006
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Posts: 96
Feeling a bit down today

Hello everyone, this is my first post, and I'm so glad to have found this wonderful site. It feels like a place I can come to and know that I'll find people who, unfortunately, can really understand.
My situation is that I've had most of the 'heavy guns' of the treatment now, since my diagnosis a year ago, and am on Herceptin 3-weekly for a year, and Arimidex. I'm finding that friends and family have almost stopped asking me how I am, how I'm feeling, and I miss that. I can completely understand; it's been a long year! But it can sometimes feel like they expect me to 'get on with it' now, when really I'm still reeling from the shock and trauma of it all, and now that treatment has eased off, now is the time that I'm beginning to re-process it all.
I know that everyone is dealing with it in their own way, and for some people they just want me to be better and that's it. I don't want to alienate my support either, by always showing or talking about how down I might be feeling. I try to share it out evenly between the people I know I can do it with (lucky them)! I guess this is another phase of the breast cancer experience, and will pass as all things do (my new philosophy).
The other thing is that I've had 8 out of 18 Herceptins now, and my ejection fraction has come down from 65% to 55%. If it goes down to 50% I'll have to stop. That does scare me. Does it often improve, and then I can re-start the Herceptin, does anyone know, or does it generally stay down?

Caroline UK
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Caroline
Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years

Considering reconstruction, maybe soon...
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Old 04-03-2007, 08:35 AM   #2
janet/FL
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Caroline
Welcome and yes, you have found a group of people that completely understand. I had a friend tell me that I was supposed to feel all better 3 or 4 months out of treatment--NOT!
I am feeling better 8 months out of treatment and I love it!
Come to this group when you need suport. You will find you are not alone.
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Janet
Endometrial Cancer 2002
Mammogram 11/2004
Lumpectomy 12/2004
Stage 1, 9mm DCIS, grade 2, Her2+++, ER/PR negative
Refused A/C as recommened by two oncs.
35 treatments of radiation that ended March 4, 2005
Changed oncologists and began
Taxotere/Herceptin August 2005. Finished Herceptin July 2006
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Old 04-03-2007, 09:31 AM   #3
Vi Schorpp
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Welcome

First, welcome. It's interesting that friends/family have stopped asking how you are....a friend of mine who underwent the breast cancer journey 15+ years ago confided in me that she hated it when people said "You look good." She thought it implied that they thought she'd look worse since she had cancer and everthing. I was amazed at that. I asked what people should say. She replied that people should always ask how you're doing and keep the questions vague unless you're close to that person. Some of my own friends didn't quite know how much to say....thank goodness we talked and I said they could ask me anything they wanted. They felt that by asking so much they were putting me in the "sick person" mode. As I told them, cancer is partly a whole and wholly a part of who I am , but it doesn't define me.

Lucky for you that you've found this site. These are the bravest people on the internest that you could know, with so much valuable information and friendship.

Keep in touch!
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Old 04-03-2007, 07:00 PM   #4
fauxgypsy
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Posts: 577
Unhappy

I have recently started treatment for Stage IV IDC with liver mets and I think I am still in shock or denial. I get tired easily and it is so frustrating. I used to be the energizer bunny. It is when I get tired that I get down. I am trying to stay positive for my husband and daughters but sometimes I feel overwhelmed. I guess every persons experience is different. How do you get through the bad times. What gives you inspiration?
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Old 04-03-2007, 09:10 PM   #5
tousled1
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Caroline,

I can relate to how you're feeling. I am almost finished with my year of Herceptin and started this battle October of 2005. Everyone thinks that since I'm through with chemo and almost done with Herceptin that everything is A-ok. I still get fatigued and I'm the one who has to live with the fear of recurrence the rest of my life. I try to maintain a positive attitude and not think about cancer all the time but still get extremely anxious every time I have my PET/CT scheduled. Unless someone is going through dealing with cancer they really can't understand the emotional rollercoaster that you are on. I guess everyone just thinks that after treatment we go back to the way we were. It's a good thing we have all the wonderful women on this site to lean on.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 04-04-2007, 02:33 AM   #6
Caroline UK
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Smile Lovely to hear from you all

Hello and thank you so much to everyone who replied so quickly! All I have to do now is persuade my husband that we need a dog...been trying for years in any case, and now here's the perfect excuse. Have to go - got to pick up some worms from the Post Office which are sitting (or squirming) waiting for me in a tub, and I have hungry robins waiting!
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Caroline
Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years

Considering reconstruction, maybe soon...
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Old 04-04-2007, 03:38 PM   #7
Caroline UK
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Location: London, England
Posts: 96
Fauxgypsy
I'm sorry to hear of what you're facing. It sounds really tough. You asked me how I get through the bad times - a good question! I think for me it depends on so many things - what else is going on in my life; the time of day, or more to the point night, which is always the worst. The 'bad times' for me means the times when I get so afraid I feel sick, and I look at my children (2 lovely girls, 14 and 16) and feel a horrible dread that I might not see them grow up, won't be around to meet their partners, play with their babies...sitting in the Spring sunshine and suddenly wondering how many more Springs I'll get to see...probably all the same sorts of things we all feel. Sometimes I have whole bad days, when I just feel deeply SAD from beginning to end, and sometimes sudden bad moments that knock me sideways and seem to have come from nowhere, right in the middle of a happy moment. How I get through them I can't work out, when I'm not in that place. I think I... phone my husband; check out this site; call a friend; go for a walk; listen to some lively music; watch any old rubbish on TV; eat some ice-cream...count my blessings; do some positive affirmations; hand-feed my robins; jump up and down...and of course sometimes all I can do is cry, sob, weep, rant, rage and just go through the agony of it. Time goes by, and something happens to change my state of mind. It's so exhausting, all of this, don't you find? But when I'm having a good day, I feel more alive, and grateful to be alive, than I ever could imagine before BC. I appreciate those moments so much. They're very precious to me, and is something I'm glad to have learned through this. Sorry this is so long, I get really carried away.
As for inspiration, I hadn't thought about that before you mentioned it, but I think I get that in bucketloads from the women on this site, and maybe from other women I've met when I go for my chemo or Herceptin.
I don't want to sound flippant, but I've found positive affirmations one of the most helpful things. I'm reading a book by Shad Helmstetter about self-talk, which is helping me look at situations in a new way. It doesn't change them, but it helps me get through in a less painful way, if that makes sense.
I'm very interested to hear how you cope with the bad times. I feel very mixed about the phrase 'keeping positive'! I think we're all positive as far as we can be, but letting your family know how afraid and alone you're feeling I think might be helpful for all of you. It can free them up to express their fears, and not make them feel they must be 'strong' for you.
Best wishes to you and your loved ones
__________________
Caroline
Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years

Considering reconstruction, maybe soon...
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Old 04-04-2007, 07:14 PM   #8
fauxgypsy
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Posts: 577
Caroline,
I am fairly new at this but I have had a lot of practice in my life at looking for the positive. And usually if I look I can find it. I love to garden so I have welcomed the extra time I have at home to work with flowers and vegetables. I have more time to spend with my new husband (who is my old friend). I have discovered how much my friends care for me. Just last week one them, who is herself a 10 year survivor of hairy cell leukemia, brought a bouquet ( all colors) of bandanas, several hats and a quilting magazine.
The oncologist had suggested that I should apply for disability and that was perhaps one of the most depressing aspects of all of this. I own my own business and have for almost ten years now doing faux finishes and murals. But I have worked it out with one of my daughters and with some part time help that I will do less of the physical work and more of the design etc and I believe that we can muddle through this.
I wake almost every morning thankful that I only get carboplaten once every four weeks. After the first week of that, the following two weeks with the Herceptin and the Taxol were so much easier. Friday I get my second treatment of carboplaten and I dread it so much. But with any luck, I will feel better by Wed. Then I can plant my tomatoes. It's only really bad when I get tired because I try to do too much and then I can feel depression creeping in. pacing myself is not my strong suit.
I only found this forum yesterday and it is so inspiring. I have found more hope here han anywhere else.

Leslie
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Old 04-05-2007, 04:30 AM   #9
Kate UK
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Smile

Hi Caroline

I can totally relate to how you feel, particularly about friends and family. I hope I may be able to reassure you re: progress of Herceptin treatments. Following an ECG last July, EF 55%, I started Ramipril (ACE inhibitor) to strengthen heart before commencing Herceptin in September 06. I had 5 doses of Herceptin until December 06, when EF had dropped to 38%. My cardiologist changed ACE to Perindopril. I restarted Herceptin (dose 6) on 19th March 07, as EF had increased to 51% following the 2 month break from treatment. My oncologist had to consult Prof Ian Smith of the Royal Marsden to get a second opinion and he advised that dose 6 could be administered on the basis that I would have an ECG 2 weeks later to determine damage. The EF on 2 April was 51%, so I am proceeding with dose 7 next Tuesday, to be followed by another ECG in 2 weeks time. I am being very carefully monitored, step by step and I'm sure that's what your oncologist will be doing for you. I've not experienced any other adverse side effects. Hope this helps!
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Old 04-06-2007, 05:31 PM   #10
chrislmelb
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Hi Caroline

Re MUGA score, mine was on the way down too. So i joined a gym and started to take CO enzyme QC10 (or whatever it is called) and fish oil. After that my MUGA score was steady. I am having another in May so i will be very interested in the results.
Re everyone else thinking it must be OK now, i can relate to that. When i mention the possiblity of a recurrence ,people think you are negative but i say i am being realistic. I choose who i say it to. It is hard to deal with, but the further down the track the better you are at coping with it. That is why it is good to meet other BC women because we understand, as i am sure we all have the same fear.
Take care
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Christine

DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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Old 04-06-2007, 06:17 PM   #11
theresaw
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Wink

What is Arimidex. I keep seeing it listed with the Herceptin. As far as I know I do not take that. Can someone explain.
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Old 04-06-2007, 10:11 PM   #12
Bev
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Posts: 1,055
Caroline, your experiences sound completely normal.Your friends will never completely understand. Just enjoy them as they are.

Theresa, AI's are aromatase inhibitors. They have a lot of different proprietary names like Arimidex. Tamoxifen binds up estrogen so your breast cancer cells can't use it. But your body is able to produce estrogen other ways that Tamox can't control. I think AI' are used to mop up this. They are used in lieu of or after tamoxifen. You can not use them if you are premenopausal, as they are ineffective. In general for post menopausal women, AI's are more effective than tamoxifen. But each drug has possible side effects. Bone loss v uterine cancer etc. Try the search tool in the purple bar above. We have had past discussions and study results. By memory, it seems to me that triple positives did OK with tamoxifen only,
but the reccomendations change every 6 months as new trial results come in. BB
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Old 04-07-2007, 06:21 PM   #13
ExpectAMiracle
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Posts: 50
I can totally relate to what Caroline is saying here about friends and family. I was DX in February 2007 and had surgery just last month. I am just starting chemo on Monday and then still have rads to face. But it seems that most of my family and friends are already backing off of talking about "IT". I don't want to talk about BC all of the time, but I also don't want folks to change the subject every time I say anything about it. I guess they just don't understand and are afraid of saying the wrong thing. If they just understood that "listening" is enough sometimes.....

I too have times of sadness in the midst of happy times and cry for no reason from time to time. But this is a rollercoaster we are on and those who haven't "ridden" this ride just can't understand how it feels (fortunately for them). That's why I love this site and all of the great women here who pick each other up when we fall down.

When I feel sad, I just play with my beautiful cat, Jazzy, talk to God who understands EVERYTHING, watch TV or come here. This is a lifeline for me and I know for many others. I can't imagine yet how I'll feel once treatment is over. Right now, that seems like a looong time off (at least a year from now due to Herceptin). But I'm determined to be the Victor not the Victim.

Happy Easter to all!
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Susan in VA

Determined to be a VICTOR not VICTIM - by the grace of God!
DX 2/8/07 at 48
1.75 cm IDC in left breast, Stage 1
Grade 3, ER-/PR-/HER 3+
Lumpectomy 3/7/07, 5/5 nodes clear, clear margins
Starting TCH on 4/9/07, every 3 weeks X 4 treatments - Completed on 6/12/2007
33 rads to began 7/2/07 and completed on 8/22/07
Herceptin every 3 weeks until April '08
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Old 04-12-2007, 02:19 AM   #14
Caroline UK
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Join Date: Nov 2006
Location: London, England
Posts: 96
Smile Feeling better for your replies

Hello everyone
There's something so lovely about hearing from you all, your experiences and what you've learned. When I read those words "I can totally relate to what you're saying", I feel so thankful and relieved, because I know I'm hearing from people who REALLY can, and it helps me so much. Thank you!! I love the feeling that although we're in different places around the world, we're connected and truly can understand very deeply what we're going through.
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Caroline
Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years

Considering reconstruction, maybe soon...
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Old 04-12-2007, 10:35 AM   #15
Caroline UK
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Location: London, England
Posts: 96
Thanks Kate, also UK like me, I see. How are you doing?
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Caroline
Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years

Considering reconstruction, maybe soon...
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Old 05-03-2007, 09:12 PM   #16
ElaineM
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Posts: 3,143
Feeling Down

Hi Caroline (and everyone else in the breast cancer boat). You came to the right place where people have been there and done that with the cancer experience and understand your challenges. Sometimes friends and relatives who have not been touched by cancer don't understand. Sometimes they just want us to "got over it" already. They may be getting tired of being supportive and need to get on with other things in there lives. It is hard, but we have to try to forgive them and do what we know is the right thing to do-----------take care of ourselves to the best of our ability no matter what other people say or think. Making new friends with people who understand is helpful.
Hang in There.
ElaineM
http://langetc.tripod.com/health11.html
8 plus year survivor still taking medicine, having an occassional surgery and taking care of myself 24/7 no matter how tired some friends and relatives are of my health challenges.
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