De Novo Stage IV
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Tinkerbell, if melatonin isn’t working for you, some other “natural” supplements I have used for sleep are KavaKava, Valerian and 5-HTP (a derivative of L-tryptophan).
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Olma61; I had an appointment this morning with my MO. I discussed sleep difficulties and the supplements tried and the ones you mentioned. MO was adamant on not taking anything except Vitamin D and Calcium. I’m on ibrance and Letrozole. However the MO decided to prescribe 1mg of Ativan. She smiled and feels confident this will help me.
Anybody try Ativan for insomnia
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Tinkerbell....My nurse daughter told me that 20mg of Melatonin is useless and overkill. I used to get Restoril which helped several years ago. But my ins. no longer covers it.
I would ask your onc for suggestions.
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For those in legal states, try a cannabis product. If you are not a regular cannabis user, try a higher CBD:THC ratio. Some formulas also contain melatonin which work well with CBB and THC. Formulations include edibles, drops, capsules and tinctures so no smoking necessary
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My doctor gave me an Ativan prescription for anxiety when I was diagnosed and I never filled it. I worked in addiction treatment years ago. Ativan is a benzodiazepine and benzos are physically addictive so be careful. Withdrawal can be difficult.
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Tinkerbell, I’m on Ibrance and Letrozole, and for those nights I just can’t sleep, I take Zquill. I don’t take it every day. If you take it, though, make sure you have eight hours at least between night and morning. It will make you too groggy if you can’t get seven or eight hours in bed.
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I went to a naturopath, who prescribed vitamin D, B12, omega 3, magnesium, and 20 mg of melatonin.
My scan showed a new spot on my liver. I'll be moving to Xeloda, after 39 cycles of Ibrance/Faslodex.
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NineTwelve--you can join us on the Xeloda thread. I don't take a bunch of supplements, but only what my onc. prescribes.
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Tinkerbelle-Have you tried cutting out caffeine? It may sound simplistic but I noticed once I started Ibrance/Letrozole I became very sensitive to caffeine and had trouble sleeping. After eliminating caffeine I find that I sleep very well most nights.
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NineTwelve, I’m sorry about your scan results. Please report back how you do on Xeloda.
I took melatonin one time a long time ago. I had crazy, wild dreams that night and never took it again.
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Thanks everybody for your suggestions re the insomnia. I am ambivalent about the Ativan. In a heartbeat I would try CBD/THC but unable to do the same based on my job (federal govt, which does not support legalization yet..) As far as Zquill, Tylenol PM, chamomile/valerian root tea, I haven't found anything that works, interrupted sleep or difficulty achieving sleep.
Chicagoan: I don't drink a lot of caffeine however perhaps eliminating completely may help. I drink one cup of half caf in the morning and occasional dark chocolate square.
On another topic I forgot to mention my MO made a reference that folks on active treatment may not obtain the full benefit of the Covid vaccine. Mainly due to our immunocompromised system. However the MO still believes some response is better then no protection. I am going to wait probably a few months until this rolls out and more info is obtained.
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Thank you for the heads-up about the vaccine, Tinkerbell.
I’m sorry none of the over-the-counter stuff helps for sleep. I hope you find something to help.
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KBL, my older dd also had wild dreams after taking melatonin. She does take a CBD/melatonin combo and that doesn’t give her wild dreams.
As for the Covid19 vaccine you can be in treatment but not immune compromised. I take Exemestane alone which is not an immunosuppressant. As a teacher, I hope to get my turn as soon as first responders, medical personnel etc have their turn. My mo gave me an unqualified go
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I also tried CBD under my tongue. It had the opposite effect. I tried it twice and could not fall asleep. I’ve been sleeping pretty decent on my own the past few nights. I wish I knew the secret to doing that every day.
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TB, didn’t mean to sound like a doomsayer or anything, but just wanted to caution you about Ativan. There are prescription sleep aids without the addiction risk of benzos, so that is maybe something to ask your doctor about too. (Lunesta and Ambien, I believe
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Olma61: Appreciate the wisdom/suggestion about the Ativan. I did obtain the prescription, rather an inexpensive drug, which was shocking. I don't plan to use it unless my PCP gives the green light in January. My MO was with good intentions. I'll ask about the Lunesta and Ambien.
As Chicagoan mentioned try no caffeine. So today is my first day. Decaff coffee from half and half caff, really makes a difference. No zip or even a little zip. Bye bye chocolate. I was surprised a few foods have caffeine and didn't even realize it. So I'll try this for a few weeks and hope for the best until my PCP appointment.
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Quick update: I had previously mentioned the EXTEND trial at MDA for oligometastatic patients to see if radiation plus systemic treatment was more beneficial than systemic alone. My bone scan this week was great and the trial doc referred to my bone healing as “phenomenal". CT was great too with no evidence of systemic disease, do NEAD below the head. I did have a drop in heart function due to anti HER2 meds, so seeing cardio soon and on hiatus from treatment but this feels like the best and safest time for a break.
Otherwise, all good here.
For those with sleep trouble, do sleep sounds or stories work for you. I found some great ones on the Calm app, just FYI.
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Mae, that's great news. I'm sorry about your heart. I hope cardio lets you know it's not too bad.
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Ill admit Ive been sleeping a lot better this week since I kicked the cats out at night, shut the door when I go to bed, and when I wake up in the middle of the night, try not to open my eyes and drift off instead. Also helping that my brain is more engaged during the day.
I read somewhere to do nothing else in bed but sleep, so I don't read a book laying down anymore, unless its right before bed. No phone or other electronics (except Kindle).
Mae - that is great news to hear, congrats!
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MAE, that’s wonderful news. Hope the break does your heart good, too.
Sleep apps help me, or just the meditation and relaxation music I find on YouTube. Great suggestion.
Also,keeping the room dark. and yes, keeping my cat out. He has a crazy way of knowing when I have just fallen asleep and somehow feels he has to wake me up. So he gets locked out now.
Not eating to close to bedtime helps me too. And trying to keep a regular schedule, which for me, is a struggle
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Mae - i responded to your report in another thread. Overall, good news pending a good report from your cardiologist.
Sleep issues - don't bother me often. Sometimes, when my mind won't 'turn off', I try to just focus on one thought, to the exclusion of all others - like how comfortable I am, or even just total blackness - until I bore myself to sleep, I guess. Lol. I have a little more trouble if I really wake up in the middle of the night ‐ usually, I only wake for hot flashes, and they pass eventually.
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Mae: Awesome news. When first diagnosed with stage IV, I started SBRT after a month being on I/L. My spine pain was so bad could barely walk. A week after treatment I was at a wedding and dancing, not busting a move, but had a little groove. My point being I am a huge fan of SBRT. If bone mets pop up again, I won't hesitate to contact my RO for SBRT. Re the heart, hope everything is ok and enjoy the break for the holidays.
Re insomnia: Thanks for the idea with the sleep apps. I'll give it a chance..
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Mae, it is great, I am happy for you and thanks for sharing your good news with us. Best wishes for speedy recovery for your heart (((hugs)))
Tinkerbell you’ve got really good response from ladies, what I can add, physical activities increase metabolism so might affect on sleeping, so I do not work out after 6 pm. Green tea before noon, cell phone shut down 30 minutes before sleeping https://www.sclhealth.org/blog/2019/09/why-it-is-time-to-ditch-the-phone-before-bed/
Question for all, have you heard anything from your MO s/ clinic about when we can get vaccine? I called the clinic they said they haven’t discussed it yet and they don’t have guidelines yet!! So Unorganized.... in our county icu beds are at capacity and virus hit here badly. State Department of health emphasizes health care staff/ front liners will receive first, I hope nurses in infusion center fall into phase one of vaccination too because they don’t really follow cdc guidelines.
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a useful link from WHO, how do vaccine work:
https://www.who.int/news-room/feature-stories/detail/how-do-vaccines-work
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Just saw this thread now! Thanks, Snowdrop, for telling Denny about it.
Great news, illimae. Hope the heart issue is resolved quickly
Also de novo here. Felt a lump one day and got a mammo and a biopsy. I was told it was cancer and got scheduled for a PET scan. Metastasis in the bone. I had been suffering back pains for a while and losing weight before that. Got a second opinion regarding treatment. Both recommended throwing everything at it, 3-agent chemo for starters. (That was way before Ibrance.) After 5 hellish cycles, got to NED and have stayed in that no-disease-but-not-cured limbo for almost 13 years through various AIs and tamoxifen. I've now been a year off any treatment.
I committed to exercising every day on my first chemo day. I haven't missed more than 2 consecutive days of exercise in all these years, except when I was running a fever. I just read some research on mice saying exercise increased the metabolism of cancer-killing t-cells, making them fitter for the job. I just happen to be a mouse. Lol.
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Heidi-Interesting to read your story. Did you have a mastectomy? What was your age at diagnosis if you don't mind my asking? I too think exercise is an important tool but I'm only a little over 4 years into this. How wonderful that you are able to be off treatment. Hope you can live a pretty normal life for many more years.
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Hi, Heidi. Welcome to the thread, and that’s so awesome, 13 years. I exercised the whole time I didn’t know I had cancer. Unfortunately, it didn’t really help. I don’t lift weights any longer, but I do walk almost every day to get my body moving.
Can I also ask why you went off treatment? Please don’t feel obligated to answer. I don’t want to pry.
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Chicagoan, yes I had a mastectomy. I was 49 at diagnosis and still premenopausal. Chemo put me into menopause.
Kbl, Tamoxifen was causing precancerous changes to my uterus. So I went to the lowest dosage (5 mg) and eventually the long term negative effects were no longer justified by the risks of recurrence by my calculation and my doctor agreed to it.
Regarding exercise, I think in a high estrogen environment (my case before diagnosis with 100 percent ER positive cancer) exercise has to be in much larger doses to be able to metabolize/offset the estrogen. After menopause and adding AIs you get more bang for your exercise buck. The benefit of exercise in alleviating AI side effects for me was a lifesaver in itself. But still I had to take many drug holidays, usually during the summer.
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Thank you Heidi-I was advised that a mastectomy would not be helpful for me-that's why I was wondering.
I agree that the exercise is worth it just for the mental health benefits as well as offsetting the AI side effects.
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Thank you, Heidi, for the information. Before my diagnosis, I had a partial hysterectomy, so no uterus. I am going to the GYN for the first time in about three years next week because I had something going on that landed me in the emergency room at the beginning of November.Just making sure all is okay down there.
I don’t miss lifting weights, but walking makes me feel good, so I go at least once or twice a day.0
