Posted on: Feb 12, 2011 08:24 PM
Joined: May 2010
Posts: 2,678
Nancynow wrote:
Hi, I'm fairly new to taking Tamoxifen. It's been a slightly bumpy road these past 2 weeks since I started taking it. It's a five-year commitment and some people have adjusted nicely. I am hoping to be one of those people soon. I'm hoping anyone with experience can make suggestions about SE's. Or, if you're a newbie and found a way to deal with some of the SE's, would love to hear it. I don't want to take other prescription drugs to handle them.
Here's some of my SE's: Insomnia is the biggest challenge so far, intermittent headaches, thirst, vivid nightmares just started this week - and every so often, my eyesight seems a little bit wonky. I used to take the pill just before bed, but now taking around 8 pm. It hasn't helped.
Any suggestions would be welcome or please share your experiences - thanks!
Diagnosis: 5/14/2010, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Kaara
Coral Springs, FL
Joined: Sep 2011
Posts: 3,534
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Jul 10, 2012 08:58 AM Kaara wrote:
I was told by my MO that if I was able to tolerate the birth control pills for so many years without any history of blood clots, that the tamox would be fine for me to take. I was, so I'm not too worried about that. I have had a couple of foot cramps and that might have something to do with low potassium...I've had that before, so the bananna might be a good idea, or a supplement.
Kaara
Dx 11/14/2011, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jul 10, 2012 10:55 AM, edited Jul 10, 2012 10:59 AM
by vacationbound
Yes purple, I agree that doing research is a good thing; I had just copied and pasted a small portion of my research as I am not going to try to convince you with a 3 page post on Strontium. If you were as far gone as me then you would be more open minded to other alternative options rather than the drugs they offer that make us worse off with their known and unknown SE's. All I know is what my 2500 hours of research in just under 9 months has told me, I also confirm everything with my ND and my Onc. Strontium is prescribed in satchets in Europe, same source as Doctors Best which I take so been on it for 3 weeks now and my hip bones are no longer popping, and my wrist and ankles have stopped throbbing. I am currently taking Arimidex, the Power 4 (mentioned above) and the Strontium. I must be doing something right.
As far as the blood clots go, what about using Aspirin (which some people are allergic) but there is also things like COQ10, Lecithin, Fish Oil, etc... to take everyday to avoid blood clots, right?
8/8/2011 IDC, 5 cm, Stage 3C, ER+PR+Her- grade 2 mitosis, 11/19 Pos nodes; 1 Adriamycin-allergic, refused anymore chemo; 32 Radiation; Tamoxifen failed, Lupron failed, Total Hysterectomy May 2012, Arimidex
Chachamom
Rancho Cucamonga, CA
Joined: Apr 2012
Posts: 491
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Jul 10, 2012 12:26 PM Chachamom wrote:
I started a Yoga class yesterday and it felt wonderful! I forgot how empowering and peaceful the controlled breathing and stretching makes me feel. No insomnia last night....yeah!!
Good morning everyone!
Jill. Age at dx 57
Dx 3/12/2012, IDC, <1cm, Stage Ia, Grade 2, 0/5 nodes, ER+/PR+, HER2+Surgery 04/03/2012 Mastectomy (Right)Hormonal Therapy 05/30/2012 Tamoxifen
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Jul 10, 2012 12:44 PM Golden01 wrote:
You've inspiried me! Yoga has been on my to-do list. I'll get back there the first week in August (have conflicts with the class time the next two weeks).
Mucinous Carcinoma, Hypercellular Variant; Oncotype DX 27,
Dx 7/8/2011, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Jul 10, 2012 04:09 PM sarasowise wrote:
So, just when I was getting used to the Tamoxifen, I have a confirmed case of Shingles!! WTH? Didn't realize I was more at risk for it after chemo etc. At first I thought my expander was infected or something, so I guess better to have shingles (can't believe I say that!) Anyway pretty sore and painful, but tolerable for now. Just weird how such random things come up now!
I also have leg cramps in the night, I think it helps if I stand up and put weight on leg. I am sure bananas are a great help too. Hot flashes continue, and funny how I am used to them now.
I plan to start pilates/yoga as well, postponed until I am not contagious haha.
have a great day.
ps I take 20mg at night with one low dose aspirin and ativan as needed to sleep.
"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful." ~Barbara Bloom
Dx 6/17/2011, ILC, 2cm, Stage IIb, Grade 2, 3/14 nodes, ER+/PR+, HER2-
Joanne_53
Hamilton, ON
Joined: Feb 2012
Posts: 1,557
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Jul 10, 2012 05:32 PM Joanne_53 wrote:
I started taking a small amount of magnesium to help with the "tired leg syndrome" --- so far the cramping is ok --- there is always something it seems but then ... I don't like the alternative.
Joanne - Onco DX score 12
Dx 12/8/2011, IDC, 3cm, Stage IIa, Grade 2, 0/4 nodes, ER+/PR+, HER2-Surgery 01/11/2012 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Hormonal Therapy 04/09/2012 TamoxifenRadiation Therapy 04/10/2012 External
purple32
MA
Joined: Apr 2012
Posts: 2,672
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Jul 10, 2012 06:53 PM, edited Jul 10, 2012 07:20 PM
by purple32
Makes perfect sense
Kaara! I recall being anxious when I went thru meno.
purple32. Hope is our light ... in the night.
Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-Surgery 05/01/2012 Lumpectomy (Left)
Chachamom
Rancho Cucamonga, CA
Joined: Apr 2012
Posts: 491
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Jul 11, 2012 02:01 PM Chachamom wrote:
Sarasowise: (((((. Sad about your shingles....I had them about three years ago and know how miserable they can be. When I learned that BC treatment can cause a new flare up I panicked because I don't think I could go through that along with treatment. Thank God, I didn't have to do chemo....so it's been off my radar. My ins doesn't cover the shingles vaccine until age 60, but your post has me thinking I should ask for an exception due to the potential recurrence factor we survivors live with.
Jill. Age at dx 57
Dx 3/12/2012, IDC, <1cm, Stage Ia, Grade 2, 0/5 nodes, ER+/PR+, HER2+Surgery 04/03/2012 Mastectomy (Right)Hormonal Therapy 05/30/2012 Tamoxifen
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Jul 11, 2012 02:14 PM sarasowise wrote:
Quick question, I was given a Rx for antiviral yesterday, from what I have read it seems like it needs to be started in first 3-5 days. From my calculations this virus started more than a week ago. So I wonder if taking another pill with more possible side effects is worth it at this time?
"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful." ~Barbara Bloom
Dx 6/17/2011, ILC, 2cm, Stage IIb, Grade 2, 3/14 nodes, ER+/PR+, HER2-
Kaara
Coral Springs, FL
Joined: Sep 2011
Posts: 3,534
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Jul 12, 2012 10:49 AM Kaara wrote:
sara: I was given the antiviral as well about a week after I contracted my shingles (I thought it was a bee sting at first) and it worked like magic...stopped them in their tracks, so take it! Mine was on my forehead and the doc said if it went into my eye it could be disastrous. It also helps with the pain and the after pain that sometimes lasts a long time and can cause you a lot of problems. A friend of ours had hers go internally and she is suffering horribly with it.
Kaara
Dx 11/14/2011, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
Carrol2
Belton, MO
Joined: Aug 2010
Posts: 2,774
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Jul 13, 2012 08:31 AM Carrol2 wrote:
OK so . . . I had terrible pain in my calf and hamstring on one leg. I was stretching it out and it got worse. I finally went to a Physical Therapist and bam it was gone before I got there. So now I don't know what it was. I suspect it was a side effect. Maybe not though I jsut wont know.
I don't see muscle pain listed as an SE anyone else get this?
Dx 6/23/2010, IDC, 1cm, Stage Ib, Grade 3, 0/1 nodes, ER+/PR+, HER2-Surgery 08/09/2010 Mastectomy (Both); Lymph Node Removal (Right); Reconstruction: Tissue expander placement, Breast implants (permanent) (Both)Chemotherapy 10/05/2010 Cytoxan, TaxotereHormonal Therapy 02/03/2011 Tamoxifen
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Jul 13, 2012 11:15 AM vacationbound wrote:
Carol-If you make a habit of taking Cal, Mag, Pot and Vit D3 together then you will see the leg cramps go away. Although they may not be listed as Se's they do quite often occur as the drug does manipulate the hormones and since the cancer cannot feed off of the receptor then it targets the lactic acid in our bones. Lactic acid is that burning feeling in your muscle after you have just worked out, well the cramping is a simulated effect of the lactic acid's going haywire, at least, this is what my ND told me. I take my Power 4 regimen everyday and my charlie horses and leg cramps have completely stopped but if I skip a day then they come back very suddenly....food for thought.
8/8/2011 IDC, 5 cm, Stage 3C, ER+PR+Her- grade 2 mitosis, 11/19 Pos nodes; 1 Adriamycin-allergic, refused anymore chemo; 32 Radiation; Tamoxifen failed, Lupron failed, Total Hysterectomy May 2012, Arimidex
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Jul 13, 2012 11:54 AM sarasowise wrote:
Carol, I have had really bad leg and calf cramps every night for a while. Back to mag/cal supplement hope it helps. I sometimes have to get out of bed and walk on leg and it helps pain to go away.
vacationbound, thanks for info, that makes total sense.
"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful." ~Barbara Bloom
Dx 6/17/2011, ILC, 2cm, Stage IIb, Grade 2, 3/14 nodes, ER+/PR+, HER2-
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Jul 13, 2012 03:54 PM vacationbound wrote:
www.livestrong.com/article/432...
8/8/2011 IDC, 5 cm, Stage 3C, ER+PR+Her- grade 2 mitosis, 11/19 Pos nodes; 1 Adriamycin-allergic, refused anymore chemo; 32 Radiation; Tamoxifen failed, Lupron failed, Total Hysterectomy May 2012, Arimidex
hawk
West Suburbs, Chicago, IL
Joined: Dec 2011
Posts: 304
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Jul 16, 2012 10:21 AM hawk wrote:
Yay - my calf cramps are under control with the vitamins and a banana a day!
Now to get control of the excessive bleeding. I have a uterine ultrasound and biopsy schedueled for next Wednesday the 25th. Hopefully everythig is fine and praying for some alternatives because I really can't take the bleeding/discharge.
Heather
Dx 11/22/2011, IDC, <1cm, Stage Ia, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jul 16, 2012 11:01 AM vacationbound wrote:
Glad to hear your cramping has dissipated! 
The bleeding my not be so simple to take care of, but nonetheless doable! Maybe a D&C to clean up the lining or something else, just glad you are being proactive in taking care of business!!! Please keep us posted!
8/8/2011 IDC, 5 cm, Stage 3C, ER+PR+Her- grade 2 mitosis, 11/19 Pos nodes; 1 Adriamycin-allergic, refused anymore chemo; 32 Radiation; Tamoxifen failed, Lupron failed, Total Hysterectomy May 2012, Arimidex
Carrol2
Belton, MO
Joined: Aug 2010
Posts: 2,774
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Jul 16, 2012 12:38 PM Carrol2 wrote:
hawk I had leg cramps in my calf and hamstring on one leg. I was feeling fine then I did an 8 hour shift on my feet and it started to kill that night and the next day when I only had a 5 hour shift. Yesterday jsut relaxed all day and by the end of the day felt better. I am taking vitamin D with calcium and I try to eat a banana every day. Also I noitce I am very weak. SO the plan is strength training as well as weight loss.
Dx 6/23/2010, IDC, 1cm, Stage Ib, Grade 3, 0/1 nodes, ER+/PR+, HER2-Surgery 08/09/2010 Mastectomy (Both); Lymph Node Removal (Right); Reconstruction: Tissue expander placement, Breast implants (permanent) (Both)Chemotherapy 10/05/2010 Cytoxan, TaxotereHormonal Therapy 02/03/2011 Tamoxifen
Joanne_53
Hamilton, ON
Joined: Feb 2012
Posts: 1,557
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Jul 16, 2012 12:43 PM Joanne_53 wrote:
I am very winded too -- some is weight I know but also because I am de-conditioned and some is rads. I started taking a ver small dose of magnesium for "restless leg syndrome" and it seems to help. I need strengthening and going to try kick boxing --- I think I can pace myself and build up but I think it is something that I could really enjoy.
Joanne - Onco DX score 12
Dx 12/8/2011, IDC, 3cm, Stage IIa, Grade 2, 0/4 nodes, ER+/PR+, HER2-Surgery 01/11/2012 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Hormonal Therapy 04/09/2012 TamoxifenRadiation Therapy 04/10/2012 External
Mini1
Michigan
Joined: Jul 2012
Posts: 1,356
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Jul 16, 2012 01:12 PM Mini1 wrote:
I am actually underweight and am experiencing fatigue as well. I think it is the radiation and the lack of exercise. I did minimal exercises with the PT and felt like I'd been in a triathalon the next day. I used to lift weights, do yoga, etc. I am in the process of getting active again, but I have 6 more rads to go, so it may take a little longer than I'd like.
Also, for those of you with depression, headaches and skin SE's side effects, niacin/B-3 supplements are a good natural treatment. Just be careful not to over do it as too much can effect the liver. As always it is wise to check with your doctor since we are all differen, but I thought I'd throw it out there.
Kitchenella
Beitar Illit, Israel
Joined: Dec 2011
Posts: 279
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Jul 16, 2012 01:26 PM Kitchenella wrote:
I've taken a grand total of 4 Tami's so far. Probably to early for SE's although my dreams have been quite real lately. I'm also feeling very out of shape but I'm waiting till I'm finished with RAD's to start anything. Right now I think it is enough that I keep my house clean and walk back and forth to the bus stops to and from RAD's.
Peggy
ACX4 ( Bi weekly) THX 12 (weekly) Herceptin for a year and rads at the end of the year.
Dx 11/14/2011, IDC, 1cm, Stage IIa, Grade 3, 1/20 nodes, ER+/PR+, HER2+
Lacey12
MA
Joined: Nov 2011
Posts: 852
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Jul 16, 2012 01:36 PM Lacey12 wrote:
Kitchenella, isn't that dream thing so fascinating. When I started Tamox I also had a different, more vivid dream experiences.....not so much now after six months, but maybe I'm just used to them so I don't notice it so much. I'm glad I don't have nightmare type dreams or I'd be jumping out of my skin! Maybe Tamox is related to LSD! LOL
My MO recommended taking quinine water for the leg cramps and that also seems to work.
Dx 8/25/2011, IDC, 2cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
hawk
West Suburbs, Chicago, IL
Joined: Dec 2011
Posts: 304
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Jul 16, 2012 01:44 PM hawk wrote:
I had the very vivid dreams in the beginning as well but after 4 months, they are gone.
Heather
Dx 11/22/2011, IDC, <1cm, Stage Ia, Grade 1, 0/3 nodes, ER+/PR+, HER2-
Carrol2
Belton, MO
Joined: Aug 2010
Posts: 2,774
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Jul 16, 2012 03:47 PM Carrol2 wrote:
joanne seems like a lot of people find taking magnesium helps I may ahve to add that to my arsenal
Dx 6/23/2010, IDC, 1cm, Stage Ib, Grade 3, 0/1 nodes, ER+/PR+, HER2-Surgery 08/09/2010 Mastectomy (Both); Lymph Node Removal (Right); Reconstruction: Tissue expander placement, Breast implants (permanent) (Both)Chemotherapy 10/05/2010 Cytoxan, TaxotereHormonal Therapy 02/03/2011 Tamoxifen
Joanne_53
Hamilton, ON
Joined: Feb 2012
Posts: 1,557
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Jul 16, 2012 03:58 PM Joanne_53 wrote:
I take a small dose and may increase it over time --- the jumpy leg thing was driving me nuts for sleeping
I have lots of dreams now -- not necessarily vivid but I dream and remember them -- I never did before.
Joanne - Onco DX score 12
Dx 12/8/2011, IDC, 3cm, Stage IIa, Grade 2, 0/4 nodes, ER+/PR+, HER2-Surgery 01/11/2012 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Hormonal Therapy 04/09/2012 TamoxifenRadiation Therapy 04/10/2012 External
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Jul 16, 2012 05:59 PM vacationbound wrote:
Carol-the ND told me to take the Power 4 regimen (Cal, Pot, Mag, and Vit D) but he said if leg cramps continue then take additional Mag tablet before bedtime-made a huge difference! Once they settled down, I went back to the Power 4 with no add'tl Mag.
8/8/2011 IDC, 5 cm, Stage 3C, ER+PR+Her- grade 2 mitosis, 11/19 Pos nodes; 1 Adriamycin-allergic, refused anymore chemo; 32 Radiation; Tamoxifen failed, Lupron failed, Total Hysterectomy May 2012, Arimidex
Mini1
Michigan
Joined: Jul 2012
Posts: 1,356
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Jul 16, 2012 06:22 PM Mini1 wrote:
Vacation - Do you ake one supplement or multiple, if you don't mind my asking.
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Jul 16, 2012 06:30 PM, edited Jul 16, 2012 07:23 PM
by vacationbound
Mini-They are all seperate supplements if your referring to the Power 4-that's my nickname me and the ND gave it so I could remember the combo! LOL! I take approximately 20-30 of other supplements a day (depending on my mood) down from 40 when I zero'd out from chemo.....the point is to keep your immune system strong, supplementation of the quality kind can be expensive but no more than all the med's we take. I just got finished paying the last of my Lupron shot bill-1 shot was 297.00 plus nurse visit charge.(My 30%) Glad I'm not doing that anymore....
8/8/2011 IDC, 5 cm, Stage 3C, ER+PR+Her- grade 2 mitosis, 11/19 Pos nodes; 1 Adriamycin-allergic, refused anymore chemo; 32 Radiation; Tamoxifen failed, Lupron failed, Total Hysterectomy May 2012, Arimidex
Mini1
Michigan
Joined: Jul 2012
Posts: 1,356
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Jul 16, 2012 06:50 PM Mini1 wrote:
Vacation - Thanks. I feel the same way. I figure what I save in medical bills I can put toward organic food and supplements. I have some gastric issues so I don't know if I can take all of them, but I'm going to give it a try when I'm done with radiation. My stomach is too owie right now to take anything but probiotics to help the nausea. Thanks again for the info. :-)
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Jul 16, 2012 07:13 PM, edited Jul 16, 2012 07:26 PM
by vacationbound
Take at least 50Billion cells for Probiotic therapy and take first thing in the morning on empty stomach. Are you queszy from the Rad's? Tell your Rad Onc, they may be hitting your stomach by accident. Rad's shouldn't make you queszy.
8/8/2011 IDC, 5 cm, Stage 3C, ER+PR+Her- grade 2 mitosis, 11/19 Pos nodes; 1 Adriamycin-allergic, refused anymore chemo; 32 Radiation; Tamoxifen failed, Lupron failed, Total Hysterectomy May 2012, Arimidex
wiskris
wi
Joined: Feb 2012
Posts: 91
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Jul 16, 2012 08:28 PM wiskris wrote:
I am one month on tamox and have also experienced a few side effects. The one that is making me angry is the hairloss. I have very short hair and I have to clean shower drain out everytime. Its not like chunks are coming out but like a shedding effect. I have also had a few hot flashes. This degree weather dont help!!
have a great day!!
Kristi
Dx 2/23/2012, IDC, <1cm, Stage Ia, Grade 1, 0/3 nodes, ER+/PR+, HER2-Surgery 03/13/2012 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left)Radiation Therapy 04/23/2012 ExternalHormonal Therapy 06/21/2012 Tamoxifen