Medical Forum / Diseases and Disorders / Breast Cancer / June 2006
Cut loose & scared
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Eva - 15 Jun 2006 23:45 GMT I just completed one year of Herceptin treatment and that's it--no more treatment for me except to continue Arimidex for 4 more years. I was first diagnosed with a Stage 3 tumor (8 cm) two years ago. I went through chemo, mastectomy, radiation, and then the year of Herceptin. I am very upset. I feel like now I have no more protection and my cancer will metastasize. I feel like now I'm helpless, nothing more can be done to save me. I am 58 years old but I am NOT FINISHED YET! My father who was the meanest son of a bitch to walk the earth lived to be 91. It's not fair. I don't want to die.
I think I need to go to a support group or something. I feel like I'm going mad.
Eva
pami - 16 Jun 2006 02:37 GMT I am in stage 2 with 3 positive nodes. I am on my second chemo and I can feel your frustration. It's so hard to be dragging and yet you need to fight...it's very hard. I noticed I am more beat with this second chemo. I just miss my energy. I have to go for blood work next week and next chemo in 3 weeks. The nausea is the pits. Some would be in bed but I am up trying to get this done and that done. I am off to my recliner chair now. Hopefully tomorrow I will feel good.. Are you going to get a reconstruction? I want to as soon as I can. I am 51. Pami
Eva - 16 Jun 2006 04:00 GMT > I am in stage 2 with 3 positive nodes. I am on my second chemo and I can > feel your frustration. It's so hard to be dragging and yet you need to [quoted text clipped - 4 lines] > Hopefully tomorrow I will feel good.. Are you going to get a reconstruction? > I want to as soon as I can. I am 51. --------------- I had to delay reconstruction because I needed radiation, but now I am in the middle of having reconstruction. It is done in stages. I've had a tissue expander for 4 months now. It kind of looks like a muffin stuck onto my chest. On July 31 I am schedules to have the "permanent" implant inserted.
(I'm supposed to make up my mind now whether I want a saline-filled or silicone gel-filled implant. I'm leaning towards the silicone. What the hell. The risk of the cancer coming back and killing me is much higher than the risk of the implant causing me serious harm.)
Eva
John Richards - 16 Jun 2006 21:11 GMT > (I'm supposed to make up my mind now whether I want a saline-filled or > silicone gel-filled implant. I'm leaning towards the silicone. What the > hell. The risk of the cancer coming back and killing me is much higher than > the risk of the implant causing me serious harm.) To give you one data point, my deceased wife had saline implants for her reconstruction. Although they looked okay, they did not feel very natural to the touch. I understand the silicone ones have a more natural feel.
 Signature John Richards
pami - 16 Jun 2006 21:29 GMT I might go the trans flap....but doctor told me that one is very painful. Panu
alex - 16 Jun 2006 23:48 GMT Back issues may disqualify you from a tram flap.
>I might go the trans flap....but doctor told me that one is very painful. > Panu alex - 16 Jun 2006 03:19 GMT You will have some protection, the arimidex. What does your oncologist feel? The doc must feel you are doing ok, since they are taking you off the Herceptin..... Alex
>I just completed one year of Herceptin treatment and that's it--no more > treatment for me except to continue Arimidex for 4 more years. I was [quoted text clipped - 15 lines] > > Eva Eva - 16 Jun 2006 04:12 GMT > You will have some protection, the arimidex. What does your oncologist feel? > The doc must feel you are doing ok, since they are taking you off the > Herceptin..... Alex ---------------- The protocol in the U.S. for Herceptin treatment (of Stage 3 cases) is one year. In Europe, she told me, some studies have continued Herceptin for two years. My heart function (ejection fraction) is down from 69 last year to 62 this year, still within normal limits, but the risk of developing CHF precludes continuing Herceptin indefinitely.
I don't feel protected by Arimidex, because my tumor was "weakly" ER+. It was strongly HER2+. This new stuff they have tested in Europe, Tykerb (lapatinib) sounds wonderful to me. It's given in pill form, its risk of heart damage is lower than Herceptin's, and unlike Herceptin it can pass through the blood-brain barrier and protect you from brain metastases. But it's not yet approved for sale in the U.S., and even in clinical trials, my oncologist said, it's only being used in patients who are already in Stage 4.
In ten years, she said, it will probably be approved for use in earlier-stage HER2+ patients.
That doesn't do me any good *now*!!!!!!!!!!!!!!!!!!!!!!
Eva
Mary Fisher - 16 Jun 2006 12:46 GMT > You will have some protection, the arimidex. What does your oncologist > feel? The doc must feel you are doing ok, since they are taking you off > the Herceptin..... Alex Yes, we should be guided by our oncologists, who understand far more about the many kinds of cancer than most people on a support group who only have personal experience to go on. Few other people's experiences will be the same as yours.
Don't believe what's said in the popular press, that's about headlines and selling papers.
Mary who has no idea what drugs she took but is still around after eight years
:-)
>>I just completed one year of Herceptin treatment and that's it--no more >> treatment for me except to continue Arimidex for 4 more years. I was [quoted text clipped - 16 lines] >> >> Eva kilikini - 16 Jun 2006 10:30 GMT > I just completed one year of Herceptin treatment and that's it--no more > treatment for me except to continue Arimidex for 4 more years. I was first [quoted text clipped - 10 lines] > > Eva Sweetie, we are your support group, 'cause we're all going through this. It isn't easy and, no, it isn't fun, but we're all trying.
Keep your spirits up. I know it's hard and I know you hurt, but you're not alone, okay?
kili
pami - 16 Jun 2006 21:29 GMT I agree we are here for you as well. Pami
A. P. Thorsen - 16 Jun 2006 15:46 GMT > I just completed one year of Herceptin treatment and that's it--no more > treatment for me except to continue Arimidex for 4 more years. I was first [quoted text clipped - 10 lines] > > Eva Hi, Eva,
There IS hope! (And you're not helpless.)
I was diagnosed with stage 3 BC almost 6 years ago at age 44, 5 tumors in left breast (largest 3.1cm), one in right, positive node on my left side. "Only" 6 months of chemo (3 mo. AC, 3 mo. Taxol), radiation on left (after bilateral mastectomy), followed by a couple years of Tamoxifen & subsequently Arimidex which I'm still taking. So far (knock wood), I'm doing fine and feeling just great.
I have a close friend, stage 3 diagnosis over 7 years ago. Her very aggressive tumor was over 7 cm, shrunk through neo-adjuvant (pre-surgery) AC & Taxotere to the point where she was able to have lumpectomy instead of mastectomy. She's still here, and also doing fine. She's . . . hmm . . . 53 now, I think.
After treatment (especially while still fatigued and stressed from treatment), I found I had to really work at feeling better, at feeling strong again. You'll get there!
There are also some hints of things *we* can do *ourselves* to improve our odds -- i.e., things for which there is *some* scientific evidence but not yet multiple strong & well-controlled studies to definitively prove benefits. Happily, these are (sorta) easy things, with mostly good side effects:
- Moderate amounts of vigorous exercise (several hours a week) See, for example:
http://www.news.harvard.edu/gazette/2005/05.26/01-breastcancer.html
- Weight loss (also may reduce lymphedema risk). For example, see:
http://jco.highwire.org/cgi/content/full/20/4/1128
and
http://tinyurl.com/fb9o6
- Good diet - such as lots of colorful fruits, veggies. For exmaple, see:
http://www.breastcancer.org/research_diet_080002a.html
and
http://www.cancer.gov/clinicaltrials/results/low-fat-diet0505 (note the bit about ER- BC, since you're concerned yours is only weakly ER+)
There are no guarantees in *anyone's* life, and sometimes some of us do all the right things but still have negative outcomes . . . BUT: many/most of us are gonna make it, you're not alone, you're not helpless, you do have strength and power, and you *can* beat this <bleep> disease.
Hang in there!
Ann T. Remove 'dontsendspam' from address to reply by email
Barb - 16 Jun 2006 23:14 GMT Hi Eva, I vividly remember having truly ambivalent feelings at the end of my treatment (22 years ago). As much as I wanted the chemo to be done, when it ended I felt like I was no longer doing anything proactive to combat the disease. Back then they didn't even offer Tamoxifen routinely. Just two years ago, my oncologist told me he didn't need to see me any longer, and I had a few bad moments at the thought of a simple yearly visit ending! There are no magic words and no specific number of months or years that will give you belief in your wellness....just takes time. I'm sure you'll do all the vigilant things that need to be done to keep tabs on your health. As Ann has said, "There is hope". Hugs to you, Eva.
Barb
Mary Fisher - 17 Jun 2006 09:47 GMT > Hi Eva, > I vividly remember having truly ambivalent feelings at the end of my [quoted text clipped - 4 lines] > and I had a few bad moments at the thought of a simple yearly visit > ending! Yes, I felt like that when my neurosurgeon said that he didn't neet to see me any more. I really looked forward to those annual visits - but he was dishy :-)
When the first five years of my bc research program came ot an end I was offered the opportunity of remaining on it for observation for another five, I grabbed it! I was told that most women just want to get away from the clinics sa.s.a.p. and try to forget the whole matter.
> There are no magic words and no specific number of months or years that > will give you belief in your wellness....just takes time. And in this matter as everything else we're all different, in every way except our humanity.
> I'm sure you'll do all the vigilant things that need to be done to keep > tabs on your health. As Ann has said, "There is hope". Hugs to you, Eva. And from me,
Mary
> Barb Eva - 17 Jun 2006 16:13 GMT Thanks to all who responded for your good wishes and good advice. I'm feeling less panicky now. You're good people!
Eva
didlems - 18 Jun 2006 10:06 GMT >I just completed one year of Herceptin treatment and that's it--no more > treatment for me except to continue Arimidex for 4 more years. I was [quoted text clipped - 15 lines] > > Eva Eva, this is how oestrogen neg bc women feel. After surgery, chemo and rads, thats it ! your on your on ! did you know this ? kathleen
alex - 18 Jun 2006 10:22 GMT > this is how oestrogen neg bc women feel. After surgery, chemo and rads, > thats it ! your on your on ! did you know this ? > kathleen Yeah, I feel that way too estrogen neg...if cancer returns only treatment is chemo! Alex
Jayu - 19 Jun 2006 05:09 GMT Eva, I think its a good thing. you can now try and put this behind you and move on with your life. and may you never have to undergo any of this again. Im sure you will do just fine. :) cheers,
Jayu
> I just completed one year of Herceptin treatment and that's it--no more > treatment for me except to continue Arimidex for 4 more years. I was first [quoted text clipped - 10 lines] > > Eva Eva - 21 Jun 2006 02:00 GMT > Eva, > I think its a good thing. you can now try and put this behind you and > move on with your life. and may you never have to undergo any of this > again. > Im sure you will do just fine. :) --------------- Well, thanks, Jayu, but really the only difference between me and your mom is that I got Herceptin.
Time will tell.
Eva
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