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Topic: Anyone else not sleeping?! Need sleep!

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

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Posted on: Aug 2, 2018 08:14AM

Onegoodfriend wrote:

I’m 63- a runner- eat clean- not anxious- am blessed- doesn’t make sense, rite?

My oncologist prescribed 5mg ambien & NOTHING ! Help please thank you x

Ogf Dx 5/2018, LCIS/ILC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/11/2018 Lumpectomy: Left; Lymph node removal Hormonal Therapy 6/27/2018 Arimidex (anastrozole)
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Aug 2, 2018 08:25AM Novmoon wrote:

Lunesta helped me tremendously.

Dx 5/2016, IDC, Left, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 7/7/2016 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 10/1/2016 Femara (letrozole)
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Aug 2, 2018 08:40AM OCDAmy wrote:

Me too! I don't want to take meds. I've tried melatonin but I don't think it works. It's frustrating.

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 2, 2018 10:04AM - edited Aug 2, 2018 10:27AM by moth

How about trying the Sleep with Me podcast? I really didn't think this could work but it does. It's just a guy telling really really really pointless boring stories. New podcast lands every few days but there are some that I just listen to over and over again. I fall asleep within about 10 min.
Set the volume so you can just barely hear it. You can set your app to turn off automatically at the end of the episode or let it continue to the next episode. When wired on steroids during chemo I once went through 6 episodes in one night - I'd just lightly wake up, hear him muttering on and on, roll over and go back to sleep.

The first 20-25 min of the podcast is him talking to the audience, talking about his advertisers & sponsors, and responding to questions from listeners etc. I recommend you skip all that and just get to the story.

of the recent episodes, 678 The Lemonade Experience has been one of the most reliable ones at putting me to sleep but I've also liked 681 Bernie the Butterfly & 685 Cloud Tower

https://www.sleepwithmepodcast.com/episodes/


Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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Aug 2, 2018 01:32PM mustlovepoodles wrote:

I have a long history of insomnia. I've used Ambien and Xanax, but nothing has worked as well as Melatonin. The first few times i took it I really didn't get any benefit from it. Then i doubled the dose, and Shazzamm! It was like a miracle. I could fall asleep easily, stay asleep all night, and woke up refreshed wolithout any hangocer.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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Aug 2, 2018 05:46PM Onegoodfriend wrote:

thank you all & god bless! soooo frustrating for sire

Ogf Dx 5/2018, LCIS/ILC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/11/2018 Lumpectomy: Left; Lymph node removal Hormonal Therapy 6/27/2018 Arimidex (anastrozole)
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Aug 2, 2018 05:59PM gailmary wrote:

i have a long 50 year history of insomnia too and anticipated it getting worse on letrezole.

Did accupuncture at drs suggestion. Take Magnesium supplements and do meditations with the "calm" app. They have adult sleep stories too. Occasionally i still struggle and resort to melatonin. 10 mg to sleep all night. Ive heard up to 20 mg is ok cause as we get older we produce none.

Did ambien years ago and was alergic.

Im finally sleeping. The breathing u do for meditation helped the most. Clears my racing mind.

Good luck

Dx 11/25/2008, IDC, Left, 2cm, Stage IIA, Grade 1, 2/12 nodes, ER+/PR+, HER2- (IHC) Dx 4/13/2017, Stage IV, metastasized to bone Hormonal Therapy Faslodex (fulvestrant), Femara (letrozole) Radiation Therapy
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Aug 2, 2018 06:13PM wallycat wrote:

20mg of melatonin every night; 95% of the time, that does the trick. I've switched it up with 10mg + 10 mg timed release and it is different enough to help.

I've tried benadryl (which is an old antihistamine) which is what hospitals use and it can make some people drowsy enough to help them sleep--doesn't do much for me for the 5% of the time the melatonin fails me.

When I go fishing on a cold afternoon and have the ocean breezes, I sleep like the dead. Clearly that is not a 100% treatment.

I read somewhere that doing a mental list of beauty-care type thinking (like counting sheep but daily care routine instead) helps some fall asleep faster.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Aug 2, 2018 07:28PM Georgia1 wrote:

Seconding the melatonin and magnesium. Magnesium also seems to help ward off or reduce tinnitus (a hormone therapy side effect) and constipation. The wonder supplement that works wonders!


Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 2, 2018 10:28PM gailmary wrote:

yes. Gotta love magnesium. Helps with those awful leg cramps too. To many reasons not to take it.

Such a shame drs know so little about diet nutrition vitamins supplements . . .

Dx 11/25/2008, IDC, Left, 2cm, Stage IIA, Grade 1, 2/12 nodes, ER+/PR+, HER2- (IHC) Dx 4/13/2017, Stage IV, metastasized to bone Hormonal Therapy Faslodex (fulvestrant), Femara (letrozole) Radiation Therapy
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Aug 2, 2018 10:44PM OCDAmy wrote:

How much magnesium and do you take it at bedtime with the melatonin

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 3, 2018 04:38AM GeorgieGirlKC wrote:

So glad to find this thread. I have suffered with insomnia since my cancer diagnosis. I have a prescription sleep med but don't like to use frequently as it is not recommended for long term use. I've also tried Benadryl, guided meditation, exercise, no naps, magnesium. I have been on letrozole for 4 plus years and suspect the insomnia is related to letrozole. Anyway, I have been reading about magnesium deficiency, sleeplessness and anxiety and decided to order a product you can mix with hot water that has magnesium and melatonin in it to see if that helps. Thankful for the sharing on BCO.

Dx 7/2013, IDC, 3cm, Stage IIB, Grade 3, 2/18 nodes, ER+/PR+, HER2- (FISH) Dx 7/16/2013, IDC Chemotherapy 8/1/2013 AC + T (Taxol) Surgery 12/10/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 1/13/2014 Breast, Lymph nodes Hormonal Therapy 3/17/2014 Femara (letrozole) Surgery 5/5/2014 Reconstruction (right): DIEP flap Surgery 8/15/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Aug 4, 2018 07:52AM beach2beach wrote:

The Sleep with Me podcasts...whoah. He bores me to sleep with the rambling. I usually take melatonin..5mg and another half and listen to the podcast..well at least a few mins of it. If I really need a solid 4hrs guaranteed, I take a xanax but I'm trying not to rely on that.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 4, 2018 10:28AM Georgia1 wrote:

I take 200 mg of magnesium every night when I take my tamoxifen. For melatonin, I read that it's best to take it temporarily then stop for awhile so I'm off of it now. Can't recall what the dosage was...and my MO is good with both. Hope that helps!


Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 4, 2018 10:50AM Runrcrb wrote:

Onegoodfriend - I too find it frustrating to do all the "right" things (exercise, healthy eating, etc) and deal with side effects of breast cancer. You didn't mention it but I assume you are on an aromatase inhibitor? When do you take it? My plastic surgeon wanted me off ALL meds and supplements prior to and for several weeks after surgery in December; consequently, I was able to add things back one at a time and assess. I went from good sleep for two weeks post surgery (no pain meds I promise) to waking up 3-4 times a night when I restarted aromasin so it was easy to identify that as the culprit of my previous sleep (or lack of) issues. I switched to taking it in the morning and got back to decent sleep almost immediately. Something to try.

Other sleep things - I took 5mg of melatonin nightly for about a year which didn't hurt and possibly helped. In my forced "stop all meds" I restarted things that were required (AI and allergy) before adding the optional things in an effort to be certain I was taking the minimum to do all the tricks. I have not restarted melatonin.

My oncologist prefers supplements to Rx as a first step to solve a side effect. I take magnesium (400mg) each morning for joint pain. I recently added tumeric (500mg) at night and she's a fan of the combo. I take my caltrate twice a day since the body can't handle the recommended dose at one time.

I have ambien (5mg) in the drawer. If I go more than a week with crappy sleep, I will take it for three nights and this typically gets me back on a good sleep schedule. I've probably done that 3-4 times over the past year.


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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Aug 4, 2018 11:03AM Nel wrote:

CBD oil has worked wonders   No THC involved  A couple of drops going to bed and I am sleeping wonderfully

Nel

You can't stop the waves, but you can learn to surf Dx 9/27/2011, IBC, Stage IIIB, ER-/PR-, HER2+ Dx 8/6/2013, IBC, Stage IV, ER-/PR-, HER2+
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Aug 4, 2018 11:29AM JoE777 wrote:

My first round with Femara beginning around May of 2012. Almost immediately stopped sleeping along with other really bad side effects. Changed to Eximistane. No change. I could fall asleep but would wake never to sleep again. Onc put me on tamazapam. Worked like a charm. In 2014 I went off AIs because of side effects and was diagnosed February of 2018 distant metastasis in sacrum of back.(moved and new docs) Back on femara, kisqali and zometa infusions. I guess I'll never sleep again. Onc says I can take benedryl which works but it only makes my mouth drier than it already is so I watch movies. Onc was worried about interfering with kisqali with sleep aids but I was in bad shape when I was diagnosed. Hugs and sleep wishes to you.


Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole) Chemotherapy Other Radiation Therapy External: Bone Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Aug 4, 2018 02:42PM Onegoodfriend wrote:

hi and thank you everyone!

Runrcrb,

Gosh I may have filled out my profile incorrectly(I’m 63 & so much better w pen and paper) yes, I am on AI- arimidex in the morning for just over one month now.

On a side note, I do take curcumin & an alkaline/detoxifier drink every morning and guess what? My awful acid redux is gone - no meds anymore for that -

Sleeeeeep:

After a pretty sleepless month, My oncologist wrote me lowest ambien dosage - HATED IT! Kept me awake- go figure

I do have a point here I promise: when my father passed 15 months ago.... I had way more anxiety & depression ...than I did when I was diagnosed w ILC JUNE 2018. Soooo back to subject to sleep- I had some left over Xanax( which I don’t need any more during the day I guess) i was told to take it and ....I finally slept.

Be well everyone :)

Ogf



Ogf Dx 5/2018, LCIS/ILC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/11/2018 Lumpectomy: Left; Lymph node removal Hormonal Therapy 6/27/2018 Arimidex (anastrozole)
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Aug 4, 2018 02:44PM Onegoodfriend wrote:

Thank you nel... appreciate that info

Ogf

Ogf Dx 5/2018, LCIS/ILC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/11/2018 Lumpectomy: Left; Lymph node removal Hormonal Therapy 6/27/2018 Arimidex (anastrozole)
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Aug 4, 2018 02:48PM jenndenino578 wrote:

Make sure you are taking the ambien on an empty stomach. Do not eat anything for at least 3 hours before taking it. Only water. Also do not take any Nexium or antacids before taking it. These drugs make it less effective.

Surgery Lumpectomy: Left
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Aug 4, 2018 02:49PM Onegoodfriend wrote:

Hi joE777

Thank you muchly ... wishing you strength, deep slow breaths ( they help me ) & restful sleep as well :)

ogf

Ogf Dx 5/2018, LCIS/ILC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/11/2018 Lumpectomy: Left; Lymph node removal Hormonal Therapy 6/27/2018 Arimidex (anastrozole)
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Aug 4, 2018 03:26PM Runrcrb wrote:

onegoodfriend,

So glad to hear xanax worked for you. I have some prescribed back in the early breast cancer/husband cancer days. I noticed zero effect when i took it. Go figure.


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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Aug 4, 2018 04:28PM Onegoodfriend wrote:

thank you jenn:)

Ogf Dx 5/2018, LCIS/ILC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/11/2018 Lumpectomy: Left; Lymph node removal Hormonal Therapy 6/27/2018 Arimidex (anastrozole)
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Aug 6, 2018 05:28PM florence123 wrote:

I have been 3 years on hormonal therapy...Just back on Tamox since March after being on Aromasin. Insomnia is a big issue bc it is a side effect of the meds. Mine is pretty horrible. I still don't sleep after exercising, yoga, meditation-nothing will make you sleep because it is chemically induced :(

What works...

1. low dose of effexor every night + some melatonin-2 to 5 mgr ( I stopped in March to give my body a break after 2,5 years and I hated the constipation)

or

2. Gabapentin + melatonin or temazepam or flexeril. Sometimes gabapentin works by itself. You might want to try flexeril by itself. I would not do flexeril long term (liver). I don't like to use sleeping pills. You can become dependent. I use temazepam about once a week.

I am seriously considering going back to effexor for hot flashes + insomnia-works pretty well...probably at the end of this month. I will stop again around May to go back to gabapentin to give my body a second break. I hate to take all those meds but this is the only way I can sleep.

I bought some CBD oil but I am afraid to mix it with gabapentin. Side effect? I have tried it by itself and I did not sleep great, although I can see the potential once off meds.

Dx 12/28/2014, IBC, 2cm, ER+/PR+, HER2+ Chemotherapy 1/10/2015 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Aug 6, 2018 07:03PM LovefromPhilly wrote:

Hi everyone!

I never had sleeping issues until my cancer diagnosis last year and starting letrazole and lupron (for medical menopause). I now have very disrupted sleep with a few hot flashes. I have taken 20mg of melatonin since day one and it does help me fall asleep.

I am currently in the state of Oregon, where cannabis is legal and am testing out some things. Specifically CBD oil with a 10:1 ratio CBD:THC. I started having panic attacks yesterday on a hike and today I feel off and very weepy. The only game changer that I have introduced is the CBD oil. I am not going to continue taking it as I have just had to take a valium and climbed into bed to try and rest.

Any one else had this experience with real CBD oil (not the kind made from hemp)?

Hugs to all - Brenda
With Love From Philly Dx 3/25/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/4/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Aug 8, 2018 08:19PM DMB1949 wrote:

Hi...I’m thinking the THC level was still to much for you....I’m going to try some edibles in the next few weeks....will let u know! I can’t sleep either! UGH! I’m on anastrozole,have tried taking it at different time,doesn’t seem to matter,I take Xanax .25mg some nights,seems to help...kinda. All the best,Dian

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Aug 9, 2018 07:37AM Onegoodfriend wrote:

Oh no! Hope my experience can help someone: finally some relief from arimidex induced insomnia: oncologist perscribed restoril- restful sleep last nite finally! bh”

Thank you everyone here!

#gratefulandblessed

Ogf

Ogf Dx 5/2018, LCIS/ILC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/11/2018 Lumpectomy: Left; Lymph node removal Hormonal Therapy 6/27/2018 Arimidex (anastrozole)
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Aug 9, 2018 08:28PM MicheleE wrote:

My husband bought me a ChiliPad. Best gift ever. It’s a mattress pad that cools (or heats) water that runs through coils. It’s been a life saver.

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Aug 10, 2018 09:09AM Runrcrb wrote:

the chilipad looks interesting. I will have to do some research on it as well as determine if i want to invest $1000 😀. Always something new to pursue


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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Aug 22, 2018 09:02AM Onegoodfriend wrote:

Restoril update:

Worked ONE night - and that’s it :

Ogf Dx 5/2018, LCIS/ILC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/11/2018 Lumpectomy: Left; Lymph node removal Hormonal Therapy 6/27/2018 Arimidex (anastrozole)
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Aug 23, 2018 01:22AM Downdoggie wrote:

melatonin can have the side effect of heart palpitations, which keeps me awake! The only thing that works for me is cannabis. I'm in a state where it is legal. I started taking CBD oil to manage chemo SE's. Now I take some edible form most nights and I sleep 8-9 hours at a time without even getting up to pee. Life changing! I had to try different kinds and doses to find the right thing. Too much and I was groggy in the morning. Too little and I still wake around 3am. People from all walks of life are in the dispensaries. Its fascinating if you grew up with preconceived notions of who consumes it

Dx 2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2+ (IHC) Surgery 2/7/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 3/15/2018 Herceptin (trastuzumab) Chemotherapy 3/15/2018 Taxol (paclitaxel) Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Breast

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