Tamoxifen for 15 years!

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JudyB
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Re: Tamoxifen for 15 years!

Postby JudyB » Wed May 10, 2017 9:33 pm

I have very thick hair so haven't noticed any thinning, however, I must say that during the day I do find a few hairs on my desk, similar to when I was losing it through chemo only no where near as many. I think that is just cruel, don't we have enough to endure without that? I hope yours stops soon.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Tamoxifen for 15 years!

Postby Janette » Wed May 10, 2017 12:52 pm

Kerrie,
You're really justified with a "pity party", and yes the research is good and the availability of the drug wonderful. But it does affect all aspects of your life and others here understand fully how you feel. :hugs:
Janette


Kerrie
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Re: Tamoxifen for 15 years!

Postby Kerrie » Wed May 10, 2017 8:36 am

Thanks for the welcome back Janette and yes Judy i almost cried as well.
I had only been thinking that morning that in August i could start counting down with only 3 yrs to go.
Of course nothing is certain yet but i guess it makes sense with secondary breast cancer still occurring after the 10 year mark.
I know if the clinical trials suggest it i will have to do it. I'm so grateful for the research and the brave ladies that participate in these trials but I'm feeling particularly stiff and sore this morning and my hair loss seems to be increasing :mad: cant imagine what i will be like after another 8 years of this.
Pity party over :sniff: time to put my big girl panties on and just get on with it :D :D
DX Oct 2009. 15mm tumour. Grade 2 Stage 2. 2/18 nodes pos. OES/PROG + HER -

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Re: Tamoxifen for 15 years!

Postby JudyB » Thu May 04, 2017 10:33 pm

Hi there Kerrie :wave:

I have no words of wisdom either but nearly cried when I read this. When I first started I was told 5 years and that any more would do nothing. I have had such stiff joints for a while now and was only saying the other day that I only had a couple of years left on Femara and that was it. I am so looking forward to not having to take that tablet any more. I did jokingly say though that knowing my luck they would extend it to 15 years. :crybaby:

Like you said, I guess we will just have to wait and see and weigh up the pros and cons at the time. We have to remind ourselves that we are 'lucky' that we have this treatment but at times it's difficult, isn't it?
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Tamoxifen for 15 years!

Postby Janette » Thu May 04, 2017 7:37 pm

Welcome back Kerrie, you're always welcome. I have no words of wisdom though, sorry. Only to wish you the best. :hugs:
Janette




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Re: Tamoxifen for 15 years!

Postby ruth1 » Wed May 03, 2017 9:42 pm

thx Kerrie - the lung problem is caused by cyclophosphamide - damn thing! Grateful to still be kicking on though.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Tamoxifen for 15 years!

Postby Kerrie » Wed May 03, 2017 8:41 pm

Really Ruth.
I've never heard of that! You poor thing xxx
They do say a break from the medications is not a detrimental thing so hopefully you will feel better and be able to make an informed decision on what is the next best step for you.
DX Oct 2009. 15mm tumour. Grade 2 Stage 2. 2/18 nodes pos. OES/PROG + HER -

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Re: Tamoxifen for 15 years!

Postby ruth1 » Wed May 03, 2017 8:15 pm

its a hard decision to make - what if!! Anyway I cant stand this way of living much longer plus I now have chemo induced pulmonary pneumonitis - stuffed lungs - so I'm ready for a break from all ca drugs.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Tamoxifen for 15 years!

Postby Kerrie » Wed May 03, 2017 6:43 pm

Thanks Ruth,
Yes the oncologist said it would depend on your initial diagnosis. Looking like it could be the an option for node positive cases but not likely for node negative.
I guess when my 10yrs is up we will see what the research is suggesting then.
There is no way i could have stayed on femara longer than the 3 years. The side effects were much worse for me than the tamoxifen and i worried about the long term side effects as you said.
The side effects of tamoxifen are more manageable for me and i have recently had a hysterectomy and oophrectomy so am no longer worried about endometrial complications.
DX Oct 2009. 15mm tumour. Grade 2 Stage 2. 2/18 nodes pos. OES/PROG + HER -

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Re: Tamoxifen for 15 years!

Postby ruth1 » Wed May 03, 2017 3:19 pm

Hi Kerrie, of course come back on here - its good to have you back and I wish we had more - been quiet of late.

I broached this whole question with my Onc a couple of weeks ago - me - femara 4 1/2 years now and still finding the se's difficult. Onc had told me visit 2016 that I can stay on for 10 years - I asked about longer but was told studies have only gone to 10 years and the risk of major organ damage is high. He didn't mention this 15 years that yours has. So, my question this visit was what percentage of protection would I get by staying on femara for another 5 years and is that level of protection high enough to risk the organ damage? His answer was ''that in my case'' he would say the level of risk was extremely low - (he didn't want to do a percentage figure) then said that he would be happy for me to stop at the 5 year mark for a while and see how I do - if the se's improve a lot then quality of life comes into it - if no change maybe discuss remaining on it. He stated that its very dependent on what the initial dx was so mine wasn't too bad - no nodes but high grade hence chemo.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Tamoxifen for 15 years!

Postby Kerrie » Wed May 03, 2017 8:30 am

Hi ladies,
Haven't posted for quite some time so hope it's ok to come back and ask for some advice.

Had my annual visit with the oncologist yesterday and all still seems to be going well for which i am very grateful for. However, she mentioned that the new research is suggesting that they might be continuing Tamoxifen and the AI's for 15yrs years post diagnosis now.
I have been taking tamoxifen then femara and now tamoxifen again for 7 years and was very much looking forward to finishing this in another 3 years. Had even started a countdown :crybaby:

I have the usual joint pain but am also noticing a lot of hair loss. I think another 8 years of this and i will be almost bald!

Has anyone else heard of this extended time on these drugs. I'm pretty devastated to say the least but also very thankful that i am still well so will continue to do what research suggests.
DX Oct 2009. 15mm tumour. Grade 2 Stage 2. 2/18 nodes pos. OES/PROG + HER -


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