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Old 07-15-2005, 06:57 PM   #1
lor
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Hello ladies (and gentlemen),

I was looking for advice on what kinds of tests I should have after I finish my chemo. As of right now I believe I am going to have a CT scan and some blood work. I am new to all of these test and was hoping you could tell me what kind of tumor marker tests I should have. I know that I should get a brain MRI every 6 months.

Here is my background with this nasty disease. I have 7 more weeks of taxol/herceptin followed by 40 more weeks of herceptin (b31 trial). Prior to that I had 4 rounds of AC. I had a lumpectomy and 8 of 18 positive nodes. BRAC test were negative. I am stage 3a Er/Pr+ and her2+++, grade 3.

I see my onc Friday and want to talk to him about my post chemo plan. I am 32 years old with a 3 and 5 year old that I plan on sticking around to see have their own children. I believe that the info I get from this site will help me see my grandchildren. I also believe God is with me as my treatment has been going very well, I was able to teach 7th graders 'til school let out and just finished teaching a week of vacation bible school! I believe God has led me to this site for support and guidance.

Bless all of you!
Lori
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Old 07-15-2005, 07:39 PM   #2
al from canada
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Lori,

It is unfortunate that you have found the need to visit this site but now that you are here....................

The one thing that struck me was: stage 3a, HER2+++, 8 / 18 nodes +, ER+.
It sounds like you may have your work cut-out for you.

I would ask your Onc about radiation treatments. It has been shown that it reduces micro-metastasis thus reducing the chances of further spread.

ER+ is a problem because at 32 I doubt if you are menopausal. Traditionally, tamoxifen has been used to block ER but it is not a good idea to take it with herceptin as it may actually worsten your condition. Aromatase inhibitors such as arimidex have shown synergy with herceptin however, you have to be in menopause.

Ct scan is good and you will have to get a MUGA prior to taking herceptin. The MUGA checks your heart function (in rare cases herceptin has caused (reversible) decrease in heart function)

I don't know that much about tumor markers so I'll let some else address that.

Good luck with your treatments,

Al
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Old 07-15-2005, 08:14 PM   #3
sassy
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Lori,

I don't feel like I can advise you on tests, however I agree with AL that you should look into radiation. I am 46, er+,pr+ her2+++, stage II, grade 2, 5 of 14 nodes positive. I had mod rd left mast in Feb, 4 dose dense A/C, have completed 6 of 12 weekly taxol and herceptin then will have 9 more months of herceptin and 33 radiation treatments. After herceptin I will go on Arimidex, an aromatase inhibitor for the er+. I was premenopausal before treatment, but at my age will be menopausal after chemo--believe me, I'm going thru all the effects (hot flashes, etc.) right now.

Like you, I plan to be around to see my children's children. My boys are 13 and 14. I was out of work for two weeks after mast, and now only miss on Friday's because I have to travel 2 hours for chemo. I too just finished teaching a week of Bible School. I teach music to all ages. There are some things too important to me, and I feel like to the children, to miss. But do realize that you do have to rest sometimes!

I feel that my faith and the prayers and support of many, many people will continue to be a huge factor in my life with cancer. I'm sure it will be for you too. Good luck, and check into radiation.

Sassy
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Old 07-16-2005, 12:01 PM   #4
*_Cathy_*
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Dear Lori- I see a couple of patterns here! I will be teaching vacation Bible school starting next Monday and I am also a Music teacher. Isn't it strange how we are all being attacked?
I was diagnosed 5 years ago with breast cancer. I had 8 months of adriamycin and taxol and 1 year of tamoxifin before he switched me to arimedex for 4 years. I had no radiation and the new docs wondered why I wasn't given it back then. Just at the five year anniversary the cancer came back to my lungs and between my lungs.I am now taking xeoda and herceptin. If I were you I would ask for radiation. They will be checking your blood markers regularly. I will be getting another petscan after my sixth treatment. I am on number three.
Keep that great positive attitude and your strong faith.I beleive those two things are major factors in this fight. I think those kids of yours will keep you too busy to be very sick anyway. God Bless- Cathy
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Old 07-16-2005, 12:24 PM   #5
lynnw
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Hi Lori,

Our situations are very similar. I was diagnosed April 04 with invasive ductal, I am ER+, PR+, and her2+++. I had a mastectomy and 8 out of 12 nodes positive. I did a combination of chemotherapy, including taxol/carboplatin/herceptin (16 weekly treatments) and AC (4 biweekly treatments). I had radiation and am now getting herceptin every three weeks and taking tamoxifen. I am 34, happily married for almost 7 years, and have a 5 and a 2 1/2 year old. I am also a 7th grade teacher! I share your belief that God has led us down this path for a reason and will guide us through. To answer your question about testing, I don't have scans or tests unless I present symptoms. For example, I recently had a brain MRI after having headaches; it was clear (Thank God). To be honest, testing is something that I think about quite a bit. I feel great right now and would like life to get back to normal without all the worrying, but at the same time, I don't want to let something sneak up on me. My doctors have told me that they do not advise regular scanning without symptoms because it doesn't really change the outcome of things for most women. So, I've taken their advice by just following up on any aches or pains that persist. I also pray constantly that God will enable me to watch my children grow up and I have faith that this will happen. Take care and God bless!
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Old 07-16-2005, 12:28 PM   #6
lynnw
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Al,
Could you show me where I can find information about not taking tamoxifen with herceptin. I am currently on tamoxifen and receiving herceptin every three weeks. I'd like to read up on this. Thanks.
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Old 07-16-2005, 12:53 PM   #7
jessica
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hi lori~
looks like you've already gotten some great advice...you'll find so many generous, incredibly knowledgable & wonderfully compassionate & supportive folks here.
just to add my 2 cents...like al said, get a muga b/c of herceptin but also b/c the you've had adriamycin too. the adria + hercep, even in sequence, can potentially increase your risk for cardiac probs, so it's good to do the MUGA to keep an eye on it all.
some blood tests you might want to follow are tumor markers like CA27.29 or look into the ner Her2serum test or even a test called CellSearch. I was dx'd @age 33, but er-/pr-, & I've been going to an endocrinologist to follow what's going on w/my hormones since the chemo puts me in transient menopause while in on, but my cyle has returned each time i've stopped tx. i'm hoping the same will be true this time too.
I have to say that I don't believe in waiting to scan until after you show signs & symptoms.Signs & sypmtoms indicate that organ's functions are already being compromised by the disease & probably leaving you feeling weak or out of breath or in pain. If I have to go back on chemo, I'd rather go after a small tumor than a big one & I'd rather do chemo while I'm still feeling strong, regardless of "the outcome"-the journey is more important to me & I'd rather feel well as I'm fighting this disease. At one point I had a tumor load in my liver described as "innumerable, immeasureable" but my liver enzymes were & have always been normal. I hate to think what my liver might have looked like if we had waited until my liver function tests were abnormal.
But, to each, his own..."Scan Time" is a notoriously anxiety-ridden time for me & tough thing to deal with every 12 weeks.
Hope this info is helpful. Good luck to you!
Keep the Faith!
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Old 07-16-2005, 12:55 PM   #8
jessica
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ps-if you go back to "index" & click on Her2 Test Page, Joe has linked up some great info on the Her2Serum test...(thanks Joe!)
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Old 07-16-2005, 02:48 PM   #9
Gina Popp
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Yes, I must emphasize all Jessica's comments about the scans and especially about the Serum Her-2 tests and the CA 27/29 and -- once you've been on the herceptin awhile, be sure to do an occassional CA 125 as after extended use of Herceptin it tends to become elevated. If anyone knows why, I'd love to hear an explanation.

I have been checking my Serum Her-2 since Fall, 2003 and am finding that it correlates with the CA 27/29 in a most curious way. If all numbers are elevated, the serum Her-2 number seems to be about 3 to 3 1/2 times the amount of the CA 27/29. If the CA 27/29 is within what is believed to be "NORMAL" range, the Her-2 will be moderately elevated, between 16 and 50. If you can get the CA 27/29 to less than 10 and keep it there, the serum Her-2 will stay in the "normal range" (below 15 or 12), depending on the assay you are using. If anybody else out there has been charting the serum Her-2 in relation to the CA 27/29, I would love to hear from them. My e-mail is Gpopp@Comcast.net. Goodluck!!!
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Old 07-16-2005, 05:03 PM   #10
Becky
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What is considered in the normal "low" range for CA 27/29?

Thank you in advance

Becky
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Old 07-16-2005, 06:33 PM   #11
al from canada
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Lynnw,

Here is a posting where this was discussed:

http://www.her2support.org/forums/index.ph...ptin++tamoxifen

Here is a quote from one of the articles:

"Another observation of relevance to this discussion is that tamoxifen has estrogen agonist effects and causes significant elevations of plasma oestradiol levels in most premenopausal and some postmenopausal patients [57]. Recent studies have indicated that MEKK1, a downstream mediator of HER2 signalling, activates ER and stimulates the agonist activity of tamoxifen [58]. Thus, HER2 positivity and increased downstream signalling could potentially convert tamoxifen from a breast cancer cell inhibitor into a stimulatory agent."

Regards

Al
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Old 07-16-2005, 07:05 PM   #12
Lori
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Thank to all of you with advice!

I should have mentioned that 33 rounds of radiation are to follow the chemo. I hope that does it for me. I know that I may be cancer free someday, but will never be free of cancer. I will always have tests to worry about (at the minimum).

Hugs,
Lori
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