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Old 12-28-2004, 04:20 PM   #1
hollis
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I am 6 months out. Stage IIB, no node involvement. I had a lumpectomy and radiation. I did not want to do chemo. I am her2 positive and ER and PR negative. I have had two pet scans, so far NED. I have been very worried about my cancer coming back and my body is very tired and I seem a bit depressed. I can't tell which one is which. I am sore under my arms and my legs ache... did anyone have any symptoms like this. I have a follow up appointment next week. I have so many people telling me I should have done chemo. It just did not seem to be the right thing for me.
Worried? Any clues on symtoms to watch for? I am grateful for this site, and I feel like I have just joined a large family of friends. Hollis
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Old 12-28-2004, 07:02 PM   #2
jojo
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Hi Hollis, ever try Herceptin?

This is actually immunotherapy, but since it's relatively new to the common folks, we just refer it to "chemo". Great factor about Herceptin is almost no side effects (like low blood counts, hair loss, etc), except just for possible heart toxicity which could be reversible from break(s) from Herceptin.

Check it out!

Also, if your aches / symptoms persist after 2 weeks, please have a doctor check you out.

Happy Holidays! ~ JO.
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Old 12-28-2004, 07:32 PM   #3
hollis
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Thank you for your reply. My doctor said he would use herceptin if cancer became evident. Did you ever have symptoms like the leg aches, and sore behind the knees? What was your dx? Hollis
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Old 12-29-2004, 08:55 AM   #4
Eccles
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Hello Hollis,

Just to say that you are not alone; I also declined chemo (and radioTx too) and, eighteen months later, have no regrets (as yet). I would never encourage anyone to do other than what their heart told them. We are unique. There is a lot of pressure, both internally and externally, to "do something". For me, it is a battle with 'self' as much as with the disease. Yes, fear and pain are so entwined it is hard to separate them sometimes. We may have had very different reasons for making the same decision, or a different decision but we need to respect and support each other because not one of us or 'them' (the professionals) knows the whole truth about any of this.
Living love and light, (as someone else on this board reminds us). Eccles
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Old 12-29-2004, 12:28 PM   #5
Patty H
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I think we all are little scared of cancer recurring. My first reocurrence was another lump under my arm. The second time, there were no symtons. In fact the day they called ( because of scan) I had just got back from walking 8 miles that day. So the best thing you can do is keep your check ups and that way if there ever is anything it should be caught early. I would say let go and enjoy life but I do know that's easier said then done. Cancer changes our whole life. How we think and live. But tha't not always bad. I try not to put things I want to do off so much. No one has a gaurentee but I am stage 4 and reality says I diffently do not have a gaurentee. Patty H
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Old 12-30-2004, 01:06 AM   #6
JoJo
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Hello Hollis,

You can still get Herceptin off-label, regardless your stage; you just need to find another onc who is willing to do so.

I was stage 3b at original diagnosis in 2003, then recurred this summer 2004, so now I'm stage 4.

No symptoms so far, despite a sneaky brain tumor (routine MRI picked up) and an enlarged lymph node near my collarbone!

Enjoy the new year, make new & interesting goals, and look forward to reaching them! :-)
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Old 12-30-2004, 04:20 PM   #7
*_Hollis_*
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Jo Jo,

Thank you for your quick reply, and the information on Herceptin. My Dr. said he would use Herceptin if cancer reoccured and that it would be a good way to fight it. Do you think I should use it as a preventive? How are you feeling? Do you do yoga, herbs, acupuncture and other alternative treatments ? I love you name and positive attitude. Talk to you soon, Hollis
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Old 12-30-2004, 04:53 PM   #8
*_Hollis_*
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Hi Patty,
Thank you for your response and wonderful insight. How are you feeling? I had stayed current with my check-ups, though I will be a month late on this third appointment, so thank you for that reminder. How quickly did your cancer reoccur and how? I can tell you are really living life and you are so optimistic and evolved in your thinking. I try to look at cancer as a blessing that makes me live my life to the fullest... to bad it took something so drastic. They are finding new treatments all the time and you will be here for a long time. What do you do to treat yourself? Do you do any alternative therapies? My love to you and in my prayers. Hollis
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Old 12-31-2004, 04:28 PM   #9
Patty H
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Hollis,
I made it 14 months before it returned the first time. I love traveling and we did a lot before the cancer. But now my hubby understands that we live life to the fullest now. My Dr. always ask when are we traveling again and where. He said he travels through us. We all have down days but I think attitude has a lot to do with things. Glad to hear that you have learned that. Patty H.
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Old 01-30-2005, 02:31 PM   #10
Ginger
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Leg aches could be from Tamoxifen I think - don't know what meds you are on. I had soreness in my feet.....both on top and underneath. I went to a Arthritis Dr. who seemed to think all the stress had brought on arthritis. Had really sore wrists, soreness in knees and back also. It is now much better than what it was. I had the AC chemo. Didn't have soreness behind the knees. Still feeling a lot of fatigue at times but slowly gettin better.
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Old 02-03-2005, 12:08 AM   #11
Carol B
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Hollis
Your post made me join. I think we all are concerned with cancer returning. I was diagnosed May 2002. My Dr. suggested lumpectomy/Radiation. After all test were compleated more cancer was found. My mastectomy was performed in July same year. I have been cancer free for two years. I chose not to have chemo. I am 41 today. I was tierd all the time. Had someone at my church suggest Barley Green it is a natural product. It has givin me a lot of energy. It is good for the immune system. I also drink carrot juice ( freshly juiced ) lots of raw vegtables. As for lots of people telling you that you should have had chemo. I agree with Eccles. We all make different decisions based on our individual diagnoses.

God bless and heath to you.
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Old 02-14-2005, 05:40 PM   #12
hollis
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Carol,
Thanks for the reply. I have been so busy at work that I have not checked this site lately. I stay worried about the cancer returning since I didn't do chemo. What was your dx? What did you do for your treatment?Thank you for your e-mail. I want to stay in touch with you. Hollis
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Old 04-14-2005, 05:21 PM   #13
LYNNE
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YOU SOUND LIKE ME.PLEASE LETS TALK.I AM DEPRESSED AND WORN OUT.I AM SO AFRAID OF A REACCURENCE.STAGE3B 27 POSITIVE NODES.3 MONTHS OF HERCEPTIN SO FAR.FEAR IS KEEPING ME ALONE AND ISOLATED.ALL I THINK IS CANCER AND HOW I WILL COPE IF THEY TELL ME I AM GOING TO DIE.ARE YOU AFRAID AS WELL.ANY SUGGESSTIONS?/ANY GOOD BOOKS?LYNNE
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Old 04-14-2005, 05:24 PM   #14
LYNNE
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I HAVE LEG PAIN DAILY AND FEAR THE WORST.MY LEGS ARE RESTLESS AT NITE.I HATE FEELING PAIN AS WELL AS FEAR CONSTANTLY.LYNNE
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Old 04-28-2005, 08:15 AM   #15
KarenWPB
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I also suffer restless leg at night and wonder if it is nerves. I had it before the chemo too and for a few yrs before diagnosed IIA last summer. I stopped using products with aspartame, loved diet coke, and it went away. But since ending chemo it is back. I am preoccupied with fear every waking minute.
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Old 07-13-2006, 01:54 PM   #16
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Sue

To Hollis: Hi! Herceptin is part of adjuvant treatment for early-stage Her-2 +++ bc. I don't think you should wait for evidence of your cancer returning prior to going on it. A major study found that it drastically reduced recurrence(around 52% I think) in women with early stage Her-2+++ breast cancer used as part of their initial adjuvant treatment. I am taking it for a year finishing later this summer. I did have chemotherapy because of one positive lymph node and I started the Herceptin subsequently. I have found no side effects except possible fatigue. My onc does muga scans every so ofter and my heart functioning has been fine. It must might keep you cancer from recurring. Good luck and God bless.
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