Starting/declining hormone therapy Nov, Dec, Jan 2018
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Pebbles, have a great vacation! We’ll miss you!
I want to share something with you. I started taking Anastrozole in December of last year and was constantly troubled by side effects like hot flushes (up to 10 times a day), joint pain and vaginal dryness. The pill was manufactured by Accord. Then I spoke to my pharmacist and begged her to order Teva for me because I read that it produces fewer side effects. There were problems getting it, but she persevered and I got my first Teva bottle about a month and a half ago.
Well, I have to say that I didn't expect that much of a difference! Now I am down to about one hot flash a day, usually in the evening and my joint pain is gone! Not sure about vaginal dryness, because I still use coconut oil moisturizer just in case, but maybe will give it a rest one of these days.
My pharmacist said that if she gets prescription, she can get Teva for anyone who needs it. It's a private pharmacy, so I am guaranteed personal attention. She also made me great scar creams for my mastectomy scars. Here's the pharmacy info, if anybody is interested. It's licensed in many states. I also posted this in other hormone therapy threads.
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Hi everyone - sorry to not have updated. I'm struggling. The fatigue is awful lately, no motivation to do much, it seems just feeding the furbabies is exhausting. Uggh. At least mentally I'm not panicked about METs or things thanks to the clear CT scan. Physically the bone/joint/rib pain has been hellish. Barely able to walk. It sucks to be 41 and feel this way. My old Spoonie life was hard, but this level of daily pain is draining. I know you all know what I mean. : /
So the plan is this, I had already had my MO appt scheduled for the 21st. So before I see her, I am supposed to go in and have all my labs redone, plus they will run my tumor markers again as well to compare to the Feb levels. In the meantime, my Primary has farmed me out to another PT to help with the rib pain. Not sure what they can do as I'm pretty sure, like Dtad mentioned, it's Costochondritis. But I'll go, if they can help with the pain it's worth it.
Hoping my WBCs come up from their current level of 2,800 (supposed to be higher than 4,300 apparently according to my clinic), and that my liver enzymes and kidney values fall back in range next week. That would be a relief. If they aren't, I'm going to talk to my MO about going off of Tamoxifen for awhile to see if they go back to normal. Even through years of Chronic Lyme Disease, IV antibiotics, many different chronic illnesses, my WBCs have NEVER EVER been anything but solidly normal, as well as the rest. The only new thing is cancer and Tamoxifen. Nothing else is different. And honestly my labs being so off and no one seeming to be alarmed is freaking me out. IDK. Just trying to make it through day by day until my MO appt.
Hope she can then put my mind at rest. Will update more when I know more. Thanks again yall for listening and being here.
Dani -- thinking of you. I'm hoping the birads 3 is truly benign. Keep us posted.
Pebbles -- Hope you are enjoying Italy! So very jealous! Safe travels and don't forget to bring something back for Domino and Tucker!
Sending healing and peace to everyone else! Keep being amazing!
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Spoonie...so sorry you are struggling. As you know, I am too. I can totally relate to everything you are saying. Costochondritis can be very debilitating. I had it for a miserable 4 months but thank goodness it went away. Yours can too! I wanted to mention to you that I also have a low WBC. IMO it goes along with autoimmune disease. The only time it was problem was when I had gamma globulin infusions and they dropped way too low and I was hospitalized. However they never really went up any higher than 3,000. I hope things turn around for you soon. Best, Diane
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dtad, I just came to the forum and searched for sternum and saw your post here. I have been having pain on my sternum for the last 1+ week. Hurts to the touch and if I sit at my computer for too long it gets worse.
I have been on tamoxifen for nearly 7 years (tolerating it fine) and started about 2 months ago Lupron shots to shut down my ovaries (fine aside from relatively mild hot flashes).
I'm wondering if you could give a bit more info on the symptoms you had and how it was eventually diagnosed and treated. I have an appointment with my oncologist next week and am trying to go my best not to go to a dark place, but the pain is for sure getting worse.
Thanks for your help!
Rose
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Hello everyone! Just stopping in to see how everyone is doing.
Spoonie- How is the rib pain? Maybe PT can make a difference. I Am sending you good thoughts for improved blood results!
I head to my MO in the morning, well according to the confirmation it will be his NP. I am hoping to get More info in order to make a decision about stopping tamoxifen. To be honest I am having a lot of anxiety about it right now. Maybe after my appointment tomorrow that will be better. I hope everyone has a great week!
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I have been on and off Anastrazole for the last 2 years due to other medical issues. When I am on it for more than 2 weeks, I have bone pain and feel like I'm 100 years old. I can't take ibuprofen. Now my hair is falling out! Is there anything I can do to stop the hair loss? I will talk to the Oncologist at my next visit but that's 4 months from now. I am about ready to stop taking it.
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Hey Dani - great minds think alike!
We are posting at the same time. We'll also both be at our MO's tomorrow morning! LOL. Good luck with your appt. I sure hope it will relieve some of your anxiety. This is such a tough battle, isn't it? Sending lots of hope and good vibes. Keep us posted on what you find out and what you decide. Supporting you no matter what. Hugs!As for me, thanks for asking about the rib pain. It's still there, going on week 9 of fiery hell.
PT and Acupuncture haven't been able to give me any relief. Only pain rx meds touch it nowadays. On top of that the Tamoxifen SEs are really piling up. I honestly don't know that I can continue it. This is only at 5 mg a day. I feel like I am 90 years old, am not sleeping, am in constant pain (mental and physical), and feel like living life in this state is not worth it. Very depressed, anxious, and stressed. Plus, am waiting on my tumor marker blood work too. The rest of it came back and thankfully WBCs are back up, and liver/kidney is more normal, though still off. Seems odd that they haven't released the CTCs yet, but maybe they are still processing. Ugggh, let's hope.
I will be asking my MO a ton of questions about studies/options/tamoxifen brands and so on (7 pgs to be exact as they are printed out and ready to go) tomorrow at my appt. I'm going to ask her for a specific Oncology Psychology referral as well. I am not dealing well with the PTSD of cancer/recurrence/risks etc. I've had to FIGHT so hard all my life to get care for my other illnesses that it's transferring to the cancer side now, and even though I have complete faith in my team, I cannot let it go that they have missed something and if I don't catch it I'll die. Not sure how to explain it but I need help with it. It's just traumatizing.
So like you Dani, I'm hoping to come away from my appt tomorrow with some answers and some tools to cope.
Sending hugs and healing to all! Will post more in a few days.
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saw my MO last week and I am off Exemestane as it has caused too much bone loss. Glad to be off, but not happy I now have osteoporosis. What a double edged sword this is!
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Hi BB- Just curious- is exemastane in
same family as “ femara”-?
I am so sorry to hear of your bone loss.
That is my quandary with these pills-
you take them, and cancer still may come
back- yet in the meantime, the trade off
is boneloss- and then i wonder
if its worth destroying body parts
to reduce risk of recurrence/mets.
especially if benefit of pill is small.
Each case is different,but itshard
to get strsight answers etc whether
to take med or not IF BENEFIT IS
SMALL. Did you do radiation?
is your risk of recurrence small?
If the benefit is small, I’d have
done same thing- and really
try and findiut howto stabilizethe loss,
do bine building exercises etc.0 -
RE: Bone loss while taking an AI
I was diagnosed with osteopenia on a DEXAScan before starting on Anastrozole. So, I'm also on a bisphosphonate. I get an infusion of Zometa every 6 months. My MO thinks that this will stabilize bone loss, and we will be checking it. He told me all along, before we knew my bone density, that there were bone strengthening drugs that we'd use for that issue. And, Zometa also protects quite a bit against bone metastasis, as it makes the 'matrix' really solid.
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I know this predictor tool has been posted in lots of places on BCO but thought I'd put it here again. It shows that in many cases, hormone therapy is more effective in improving overall survival than chemo (or even Herceptin).
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Rose.d Sorry I just saw your post. My costochondritis just happened overnight! I had been doing pilates and weight training at the time though. It started as severe right sided chest pain. When I pressed on my sternum it hurt. It was 24/7 pain and never let up for 4 months! I actually diagnosed myself since most BC docs deny, deny, deny! I used a heating pad and took large doses of Advil but it really didn't help much. Sorry if I'm being so negative but it was miserable and debilitating. Thank goodness it went away the same way it came. I still get twinges of it but that's it. I did a lot of research and discovered it is not uncommon following mastectomies. I hope this helps. Please let me know if you have any other questions.
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So I went to my MO appointment this morning and I am feeling a bit frustrated. I tried to understand my risk of recurrence if I stop tamoxifen. He said according to my mammaprint results I have a 3-4% risk of distant recurrence with the tamoxifen. He went on to say that we should be glad that I do not have to deal with the effects of chemo due to this low risk result. I asked what my risk would be without tamoxifen and he did not give me a %. Just that he feels it would be dangerous to stop it. He said that with my age, large tumor, and node status it is too much of a risk since I did not have "systemic treatment". He mentioned that some would argue that with my tumor size chemo would have been given, but he said according to the genetics of my tumor hormonal therapy is the treatment I need. That statement really did not sit well with me. I undertsood that I was clinically high risk, but he did not mention that when he told me I did not need chemo. I asked, "so at 5 cm some would say I would have needed chemo anyway?" He said "yes" I am not sure if he was just trying to get me to understand how important the tamoxifen is but that worries me, since my tumor was 4.8 cm.
He asked about hot flashes and I told him I only get them at night. He mentioned a couple of meds that I could not understand the names of and I asked would this help with the fatigue and his reply was yes. I became tearful and he was kind and said, I will go ahead and write for a medicine for you. I get to check out and ask what the medicine is, and they do not have listed that he is sending an Rx over and they would need to check and call me, so they just called and said he is calling in effexor for me. This is not going to help this fatigue I am experiencing. Is it because I cried???????? I asked the nurse about him mentioning something for the fatigue and she said he had not written anything down. I honestly gave up. I am mad at myself that I didn't persist in understanding everything. He also mentioned maybe going to a clinic for women going through menopause. I guess I need to find a way to deal with this fatigue, I just do not know what to do. I can barely make it through a shift at work and have no energy to even socialize. Also he said he does not need to see me for another year. I feel like I am just stuck out there to deal with this SE. I am just feeling defeated I guess, rant over.
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Dani, I am actually surprised they didn’t recommend chemo for you. My tumor was smaller and I had macromet in only one mode, but I went through chemo and radiation AND now am on Arimidex. Please take the med, we only have one chance to get it taken care of.
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Dani, I'm so sorry you didn't get the answers you were seeking. It's the onc's job to help you understand your individualized risk of recurrence. Sounds like he didn't do that. If I were in your shoes, I would seek out a second opinion. You should NOT have to live with bone-crushing fatigue. And I forget, were you doing the lower 10mg dose?
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Dani - I second a second opinion
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Dani - I am too exhausted to post about my own MO appt today, but did want to offer my own experience to you. Maybe it will be helpful.
My previous MO was not someone who took the time I needed during appts, was not open to my questions, and just really couldn't help me understand in the way I needed her too. I got a second opinion and am in LOVE with my current MO. It was a tough decision but I knew I would be unhappy and more stressed if I stayed with that MO.
So, have you given any thought to seeking out a second opinion? Maybe it might be good, especially with the size of your tumor and node status? IMO we have enough to stress about, our appts with our team shouldn't add to that.
I'm sorry things were so stressful today. It's ok to cry and be frustrated. There's a lot of info during appts and not alot of time to process it all in.
Maybe you could go back in to get things straightened out? That should be an option too, unless of course you'd prefer to just go get a 2nd.
Oh and about the Effexor - I do know that my FireFly sister (breast cancer big brother/big sister type program) was rxd that to help with the SEs of her endocrine therapy, not neccessarily for depression, although she is on meds for that additionally. So perhaps your dr was hoping the Effexor would help with the fatigue and hot flashes?(https://www.breastcancer.org/research-news/effexor-vs-hrt-for-hot-flashes)
Hang in there my friend. Sending gentle hugs.0 -
Dani, I'm so sorry you left your appointment feeling frustrated. I think a second opinion is a great idea. It could ease your mind that you're on the right path, or suggest a different/better treatment plan. You might find an MO with a better bedside manner. Would it help to bring a relative or friend? I brought my husband to my “big" appointments. Besides the support, a second set of ears was helpful for me. My MO started me on a low dose of Effexor. It was supposed to help the awful hot flashes at night, and it did. However, it has helped me sleep better and longer, so I have more energy. Over the last 5-ish years, I've had gradually increasing anxiety. It happened gradually enough that I thought it was the new me. The Effexor helped that too. I haven't had any side effects either. Feel free to PM me if you want to chat more.
Spoonie, it's good to hear that you've had some improvement with your bloodwork! I'm so sorry the costochondritis is giving you so much pain. You seem like such a strong advocate for yourself. I'm glad you're planning to see a psychologist. I've learned that taking care of your mind is as important as taking care of your body.
Pebbles, are you home yet? We're all dying to hear about Italy!
I send love and support to you all - I'm so grateful for you!!
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Dani444 Thanks for sharing that complicated story about your treatment. I think, as others have just suggested, that I'd also want a second opinion right now, from a new oncologist who will review your whole case. You have a couple of big questions, and difficult SE's which should be addressed. Fatigue sounds super Not Fun, and important to follow up on. Maybe it's time to see your PCP to discuss all this? Has other stuff been ruled out, like hypothyroidism or depression?
There are so many complicated diagnosis issues now (NCCN-guided--National Comprehensive Cancer Network) which are used to determine whether chemo is beneficial. It is often the case, surprisingly to lots of us, that anti-hormonal long term therapy is MORE effective than a chemo course, and the borderline cases (yes/no/not sure about chemo) often get a further OncotypeDX test. (That's a proprietary genetic marker test which predicts efficacy and benefit of chemo--your blood is sent to their lab and the analysis and score is sent back to your doctor)
You said: "He mentioned that some would argue that with my tumor size chemo would have been given, but he said according to the genetics of my tumor, hormonal therapy is the treatment I need. "
The part I'm tuning in on is the genetics---my own OncotypeDX ended up showing chemo would have a benefit, after my tumor size and type and pathology and surgery path markers would have indicated "maybe not." So, I wouldn't necessarily doubt your MO's call on not giving you chemo. The new OncotypeDX studies which came out in the past year changed the landscape (based on outcomes, extension of life and recurrence risk statistics) enough to alter, quite a bit, who was to be given chemo.
Since the Standard of Practice in oncology is often based on NCCN guidelines, our MO's are rarely just guessing. They're basing treatment plans on statistical outcomes and specific pathology and diagnosis information. But, you should have those exact things explained to you, so that you can 'buy in' on your TX plan and feel positive about what you have to go through and why.
If your MO is not explaining it well, maybe you can somehow ask to have him explain exactly what the specific things are in your DX that are informing his TX plan for you. Or, maybe another MO can explain it more clearly. If a different MO has a different conclusion and treatment plan, that's worth knowing about and finding out what the difference is based on.
In my case, my MO says that by taking my AI for 5 years (or longer---research is still out on benefits for additional years) I will cut my recurrence risk in half, and that will bring me up to a 90% chance of being cured. Without an AI, I have more like a 75% cure rate. Ugh. It's clearly a big deal for me to be on my AI.
I wonder if stopping Tamoxifen for 1-2 weeks gives people a "re-set" and reduction in side effects? It's something that many people say (and also my MO has explained) is true with AI's, but I have no idea if it's a thing that is helpful with Tamoxifen.
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Dani444, I also think you should get a second opinion. I also had an MO appt today because I had a problem with my grip strength and pain in my hands after 4 mos on Anastrozole. MO took me off it for a month (now I feel great-hands almost back to normal, less fatigue, less shortness of breath, less blah feeling), so asked what my risk of recurrence was if I stayed off. He told me he estimates my risk of recurrence with endocrine therapy at 8-10%, without 25-27%. Also asked what magic happens after 5 years so I don’t need it anymore. He said in his opinion, that is when the risk starts to outweigh the benefits (bone loss mostly, for AI). Not sure I 100% agrees with him, but that’s a ways off for me. He wanted me to try Tamoxifen, but I asked if I could change brands of Anastrozole first, and start back at every other day instead of every day. He was ok with both things, and wants to see me a month from when I go back on. I don’t agree with my MO all the time, we’ve knocked heads a couple times, and I sometimes feel like he rushes appointments, but so far, he does listen. I think you would feel better with someone that explains things a little more. Also, did you discuss maybe a lower dose? Even if MOs don’t agree with that, I think if you suggest it like would you rather see me on a reduced dose, or quit altogether?,they get a little more receptive.
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Cassie and hiking lady, I too was warned about bone loss, I started with osteopenia, but after only three months of Anastrozole and another three months of Exemestane ( Aromasin) I experienced a severe loss of bone, 10% in my spine alone. And I had started fosamax two months earlier. I had done radiation the first time.
So for me the AIs only provide a two percent benefit. The bone meds 1% improvement. The current bone loss, risk of further bone loss plus the usual side effects make it not worth it For Me. Everyone is different but it is not a one size fits all. So make sure you ask about your individual risks and benefits.
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Dani - perhaps your MO thinks you are tired because you are having hot flashes at night and they are disrupting your sleep, hence the effexor, which will treat the hot flashes and thus allow you to sleep better, hopefully curing the fatigue. I'd give the effexor a shot.
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I'm still too tired to post about my appt, but I will say that my WBCs were better, my tumor markers in range, and in all, things are looking positive. Unfortunately my Potassium, Zinc, and Iron are very low (this has never been an issue for me) so even though I already am on supplements for these, my dose needs to go up and be rechecked next week. I'll post more later, when I have energy. This Tamoxifen just beats the crap out of me and I feel 90 years old every day.
Anyway, before signing off, wanted to pass along this good news to yall, as I know, at least for me, this was a source of concern in the beginning when taking Tamoxifen and Antidepressants such as Cymbalta. I'm sure some of you may have similar concerns.
My MO yesterday passed it along to me at our appt. It seems to be good news, even if granted, a small study in comparison.
https://www.ncbi.nlm.nih.gov/pubmed/30542984CYP2D6-inhibiting medication use and inherited CYP2D6 variation in relation to adverse breast cancer outcomes after tamoxifen therapy
PURPOSE:
Tamoxifen is widely used to reduce the risk of breast cancer (BC) recurrence and extend disease-free survival among women with estrogen-sensitive breast cancers. Tamoxifen efficacy is thought to be attributable to its active metabolite, which is formed through a reaction catalyzed by the P450 enzyme, CYP2D6. Inhibition of tamoxifen metabolism as a result of germline genetic variation and/or use of CYP2D6-inhibiting medications ("inhibitors") is hypothesized to increase the risk of adverse BC outcomes among women taking tamoxifen.
METHODS:The present cohort study of 960 women diagnosed with early-stage BC between 1993 and 1999 examined the association between concomitant use of CYP2D6 inhibitors and adjuvant tamoxifen and the risk of adverse BC outcomes (recurrence, second primary BC, BC mortality), both overall and according to CYP2D6 metabolic phenotype.
RESULTS:Six or more months of CYP2D6 inhibitor use concomitant with tamoxifen was not associated with any appreciable increase in risk of recurrence or second primary BC or BC mortality, and there was no clear evidence of variation by CYP2D6 metabolic phenotype.
CONCLUSIONS:These results are consistent with the relatively few other large, population-based studies conducted to date that have not observed an increased risk of adverse BC outcomes associated with CYP2D6 inhibition.
KEYWORDS:Breast cancer; CYP2D6; Pharmacogenetics; Survival; Tamoxifen
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Also, there is this new breaking news...
A Rare Genetic Mutation Leads to Cancer. The Fix May Already Be in the Drugstore (NYT Article)
Study: https://science.sciencemag.org/content/364/6441/eaau0159
"In a study published on Thursday in the journal Science, researchers found evidence that a compound called indole-3-carbinol (i3c) blocks an enzyme that inhibits the activity of Pten. With the gene more active, patients with the mutation may be better protected against cancer."
"The mutation is not just inherited; the Pten gene is spontaneously mutated in many tumors. When that happens, the patient's prognosis is poor."
"The gene governs production of an enzyme that stops cells from dividing too quickly, reducing the chances that cancers will form. With reduced activity in Pten, cells grow uncontrollably.Pten mutations do not completely halt the gene's functions. Instead, the mutations tamp down the gene's activity, so cells make less of the enzyme needed for orderly growth.
But one of the hardest things for researchers to do is to find a way to increase, rather than turn off, a gene's activity. Eventually, Dr. Pandolfi and his colleagues learned enough about the Pten system to reason that i3c might do the trick.
"We got lucky, or smart," he said.
Dr. Pandolfi and his colleagues tested their treatment on human prostate cancer cells and in mice bred to develop prostate cancer. It worked: In the cells and in mice, i3c treatment resulted in fewer cancers, and those that arose were small and less deadly."
Keywords: DIM Supplement, i3c, Indole-3-Carbinol
Glad to hear that one of the supplements I'm taking is DIM. Fingers crossed.0 -
Spoonie...thanks for the information. I refused anti hormone treatment from the start for many reasons. I have been taking Breast Defend which has DIM and Indole-3-carbinol in it since my diagnosis. I'm over 4 years NED. So far so good. This information is very encouraging!
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dtad...can I ask you how large are the Breast Defend capsules? This is something I’m interested in taking but I cannot swallow large capsules. Thanks!
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Kec - I take Estro DIM and to me they are not very large. Definitely smaller than most fish oil pills, probably the size of the average sudafed capsule or a smaller type supplement capsule. Even my MO knows about EstroDIM and has a few patients of hers on it currently. She is not advising me about them, but she just "knows" about them, if that makes sense.
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Ok ladies, how's everyone? Hope yall have some relaxing time to spend with family this weekend. I'm hoping to spend some with my folks if the weather cooperates. At any rate, wishing you all well and wanted to say thank you for being here. Knwoing you are all here, going through similar obstacles and struggles in more comforting than I can really put into words most days. So thanks from the bottom of my heart for listening when I ramble......and hopefully you'll listen again, as here comes another
This is the update from my MO appt this week. It's not looking good for the Tamoxifen route in all honesty.
As most of you know, I have a long history of multiple chronic illnesses with immune system issues and was super hesitant to even try Tamox. But my new MO offered some good points and info, so I gave it a try. Have been on it since the end of March. 5 mgs daily.
Just as a recap of what's been going on :
The SEs started within the first 2 weeks or so. Gradually building more and more. My fatigue is now crushing to the point just taking my dog outside for a short walk is monumental. Dishes sit undone for days, as does the wash, which is NOT like me at all and I hate it. It's simply because I have no energy and the pain is too intense. To the point I cry most days just to move around. I literally feel like I am 90 years old. No offense to anyone who is that age, my parents are in their 80's and have some aches and what not, but at 41 it's made the chronic pain I already before cancer, reach the point where I have had to ask my primary for extra pain meds.
Ever since starting the Tamox I cannot drink any alcohol otherwise I feel like I've had 2-3 bottles rather than a small 4 oz glass of white wine. My migraines have gone from being manageable and under control with my prior rx meds, to raging and uncontrollable. Not to mention my depression and anxiety are skyrocketing as well, despite an increase in my antidepressant dosage. Sleep is no longer restful but pain-filled and broken, when I am able to actually sleep that is. I'm up most nights until 7 or 8 am even though I've wanted to sleep since 7 or 8 pm! I also have weird "red circles" on my lower legs (range in size from 1/4" to an 1/2" in diameter) which my MO has never seen before (lucky me, but I'm used to being the zebra). They don't itch, hurt, aren't' swollen, or raised, they are smooth like the rest of my skin. They last for a few weeks and disappear, while others appear in other spots and fade out again.And according to my MO my body isn't absorbing Potassium, Iron, and Zinc. So we have to increase my supplements and recheck next week. At least the good news was that my CTCs were in range and so were my WBCs and liver/kidney values this time.
All of these SEs have really made my quality of live nearly unbearable. I feel like I can't do the bare minimum anymore, hell just sitting to watch TV hurts my hip bones so badly that I have to go back to bed and lay down sometimes until the pain fades a bit. This all just takes me to dark places, like back to when I was severely ill in 2015 and had to move home with my folks to take care of me. It's awful.
Acupuncture doesn't help with any of this, even though as most of you know I've had great results with it helping my Breast LE/Fibrosis/RADs pain.
Anyway, sorry for the long ramble. I'm just to the point where it doesn't seem feasible to me to continue on with this, even at 5 mg. Which, I am SOOO very thankful my MO started me at that low dose. I can't imagine where I'd be if I'd taken the 20mg.
The plan my MO and I came up with is to try adding Gabapentin to help with the pain and insomnia.
If this doesn't provide relief in the next 2-4 weeks (if I can hold out that long to give it a try) then she said she would suggest swapping out brands of Tamox (as some of you have mentioned has helped with your own SEs).
If that doesn't help, the option after that is medically induced ovary shutdown and/or removal, along with adjunct Arimadex. I'm not even at a mentally stable place to even contemplate those options yet. Ugggh.
I just really am not sure if I can make it that long on this at this rate to give the Gaba a try, but I will do my best. I really want to throw my bottle of Tamox away and get any sembalance of a life back for awhile. Things are dark right now. It sucks.
So, has anyone had luck with Gabapentin helping with the bone/joint/spine pain?
If so, when did you notice it begin to help?
Did it help with other SEs besides pain, like sleep/fatigue/insomnia etc?
Thanks in advance.
Hugs and healing to all. I am so thankful for this forum and for you all, my second fam.
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Spoonie--I'm so sorry for all you're going through. It's admirable that you're still trying, and maybe even considering going the AI route. All I can say, which is probably not at all helpful, is that a lot of women feel that the one thing that helps the pain is moving a little bit. I know that's not what you want to hear given your fatigue level, but could you start with a tiny bit of very gentle stretching? One or two teeny tiny walks through the day? About the worst thing you can do for joints is not move. In time it might even help your sleep.
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Spoonie, my husband took Gabapentin for a couple of years. He has a bulging disc in his upper back plus nerve inflammation caused by arthritis in his lower back. The Gabapentin managed his pain well (started working quickly) but it was definitely nerve pain and not bone/joint pain. The Gabapentin made him sleepy, especially in the late afternoon and evening. He also felt a bit of brain fog, and just not himself. His neurologist switched him to Lyrica. He feels it controls the pain a tiny bit better, with none of the sleepiness or fogginess.
I’m looking forward to the 3 day weekend. It’s been a busy and emotional few weeks at work, so I just want to relax and recharge my batteries.
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