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Up dates on my BC

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Laura41 View Drop Down
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    Posted: Aug 25 2010 at 1:42pm
Dear all,
 
I apologize to you all that I have not visited the forum for some time now.
 
I am surprised that a lot of new members joined in the past few months and I use this ocasion to welcome them all. Just wanted to up date on my cancer condition all the wonderful women and men on this forum who have helped me and were 'there' when I needed most!
 
I remind you shortly about my cancer history, I had been diagnosed in October 2009 with right breast triple negative infiltrating ductal carcinoma grade 3, 3.1cm multifocal malignacy (2 tumors one of 1,1cm and the other of 1,8cm close to each other), and had chemoterapy prior to surgery for four months (AC x 4 plus Taxol x 4 on dose dense), after which end February I had a double mastectomy with immediate reconstruction with tissue expanders in preparation for silicone implants. The expansion (infiltration with saline) took few months, and after that in mid May I started radioterapy for 3 weeks just to the right side. I am also BRCA1 positive therefore double mastectomy was necessary.
 
My oncologist had adviced to remove ovaries, however not as an emergency measure, and therefore I am under surveillance now - In April I had an ultrasound scan of the ovaries and everything was all right, plus I had been checked for CA125, CEA and HE4 twice this year starting April - of which results were fine.
 
In few days I am planned for the exhange of expanders to permanent silicone implants surgery with the same medical surgeon who did my double mastectomy. He recommended to replace the expanders with Allergan Natrelle anatomical silicone cohesive gel implants. He is a breast surgeon, however not a plastic surgeon himself, but did such reconstruction work in UK.  
 
Apart from the usual symtoms I had during the chemo and after, my main complication for the time being seems to be join pain (my hand and leg fingers and knees are hurting every morning when I wake up, and also sometimes during the day I feel quit bad with my knees). A bone density scan BDS has been done in March and everything seemed to be normal then. I was told by my onc that the cause of such symtoms are the pre-mature induced (by Chemo) menopause, as my periods did not come back.  However, I suspected that I have arthritis.  The onc did not give any follow up medication, because it seems I am not eligible for hormone terapy or anything else due to my triple negative condition.
 
Is that the case?! Women whoes cancers are Triple Negative get only chemoterapy and then, nothing else?
 
I am not taking any medication, apart from multi-vitamins plus Calcium and D3 fortified 400iU twice a day.
 
Let me know of your thoughts. Also, if I can be of any help to any of you, let me know too.
Love,
Laura
 
dx 10/2009 @41 TNBC IDC grade 3, stage II, 3,1cm lumps, BRCA1+, affected lymph nodes@PET, start 10/2009 to 01/2010 Chemo AC x 4 plus Taxol x 4 dose dense, 02/2010 dbl mastectomy with right axilliary disection 12 nodes, immediate reconstruction, 05-06/ 2010 3 weeks rads on right side, 08/2010 planned for implants replacement
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2010 at 12:17pm
Yes Laura, once we have our surgeries, chemotherapy and/or radiation there is nothing else for us to do other than check-ups, vigilance and a watchful eye for symptoms lasting longer than two weeks.
 
You very well may have some new arthritis although I am not a medical professional.  I know I picked up some extra after treatments and have read of other's suffering as well.
 
It's good to hear from you,
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2010 at 12:07am
Dear Laura,
You may want to bump up that D3 to 5,000 IU/day.

Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2010 at 11:39am
Laura,

I agree with UnkleZ. 

The Edges-CAM research recommends the following levels.  As a rule of thumb, to increase your Vit D level by 10 points you need to increase your supplementation by 1,000 ius. 

http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4807927&trail=20#1

 

Benefit Objective

Target 25OHD (aka, 25(OH)D Vitamin D3 Level

 

 

Optimal  Bone Health

> 42 ng/ml

Anticancer Activity

> 52 ng/ml

AI-Disability Relief

> 66 ng/ml


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Ranee View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ranee Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2010 at 12:00pm
Good to know about vit. D levels. I have been taking 4000 units daily and although my levels have increased they still show below standard. by the way did or does anyone else hate r/t therapy or am I the only weirdo?
Dx 1/10; Surg 3/10; 2.5cm tumor rt breast +2 lymph nodes. Lumpectomy w/dissection. Stage II Gr III
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2010 at 12:19pm
Ranee,

I was taking about 4,000 ius a day and my levels got up to about 48.  I increased it to 7,000 ius a day and last check the Vit D level was 68.

Sorry you're having problems with radiation tx.  I didn't have it but others probably will comment about their experience.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote CTB Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2010 at 10:11am
Ranee: I also HATED radiation tx. Others had told me it was a walk in the park, or a piece of cake or other terms that minimized the whole process. I found it very difficult to go through. Psychologically it wiped me out. I had a great Radiation Oncologist who I liked and respected, if not, it would have been harder to go everyday. So no you are not alone, I know exactly what you mean. Hang in there. Once it was over (7/06/2010 for me) I truly felt I was on the road to recovery and that I ws back in charge of my life. It does get better. Chris
Dx: 12/10/09; Lumpectomy and SNB 12/28/09 2.0 cm tumor 0/5 nodes; clear margins; TC x4 ended 4/10; 33 rads ended 7/6/10
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 31 2010 at 1:06pm

Having radiation for me, anyway, was not the same as having chemo, think that is why some might say "walk in the park" as they are comparing it to chemo.  Guess that would be me, cannot speak for others.

No way would I ever say it wasn't any worse than say getting a flu shot, quite the opposite, overwhelming, scary, a multitude of things going on, just wasn't laid flat on my back like chemo.
Other issues, yes, tired, burning, no answers to questions, hello/goodbye/radiation side effects long term? etc..
 
I wouldn't minimalize radiation treatments, it is just that it is a different can of worms than chemotherapy.  Physical/emotional trip of it's own.
Stage 2 2003
Stage 1 2007
BRCA 1+
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