Starting/declining hormone therapy Nov, Dec, Jan 2018
Comments
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Thanks Edj3. You are such a kind soul. The comfort and support right now is a huge salve, truly. I'm trying my best tostay distracted and not panic. Not an easy thing to do, as most of you know. Thankfully Stranger Things Season 3 came out today so I'll probably binge watch it all to keep my mind off of the SEs starting and the lump. I've moved the cat and the puppers into the bedroom, set up the TV for Netflix, got my pillow and blankets all comfy arranged and am going to chow my way through some popcorn while lounging in bed trying to forget the world. I think it sounds like a good plan, right? LOL.
I'll be back later but thanks again so much for taking time out of the holiday to give me a hug and a shoulder. I'd soooo be lost without this community.
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Spoonie- I think your plan sounds perfect. Seems we need to perfect distraction techniques through all of this! I am sorry your bone pain is coming back. I am sending good thoughts that it doesn’t progress! Did your doctor mention any possible treatments for this SE? Hopefully someone on Zoladex will come by with some input. Hang in there Spoonie!
LPLlibrarygirl- The follow - up appointments are interesting! I am surprised by the differences. I was moved to one year already with my MO but I am still considering everyone’s advice to just get a second opinion and find an MO I click with better. But as Spoonie mentioned about difficulty making decisions, well that is me. So I am slowly working towards that because I think it will be helpful. As far as the fatigue ( thank you for asking) it is still there. I too am sleeping better since starting the Effexor but I am still exhausted.
I did notice since starting the Effexor that I have a bit of an improvement in my mental health. Even though I am still suffering with fatigue I noticed a few weeks after starting the Effexor I wasn’t getting so emotional about it. Such as not dissolving into tears most days, which is what was happening.
Hikinglady- Thank you for sharing what you learned from your MO. That was helpful to read. It is nice that your MO seems receptive to any potential concerns.
Wishing the best to everyone as we continue on!!
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Hey Spoonie- hang in there-after docs
greenlight- i think the best
thing you can do right now is keep
walking around your pond.. without
comparing it to before- each day is
a new goal and focus on that...gradually
adding distances. I have no idea
what your activity background is-
but I really believe that if you keep yourself limber the aches and pains can be managed- no matter how small
the increments/efforts to start.
Also- If you did not see that bump
a few days ago- its highly unlikely
that its cause for concern- easier
said than done I know- with every ache
and pain comes a worry and a wonder.
I do it myself.- keep us posted0 -
It's just hard to do Cassie, and I know I'm whining, but my brain knows yesterday I could do this, easy peeasy, now my back feels broken after walking 1/8th of the distance and I had to sit down before slowly walking back home. It's not natural. I'm active as I can be with my Spoonie conditions, walking, yoga, light weights, is what I'm limited to per my other drs. Sure tomorrow I can try to walk a little further, but I did try that on Tamoxifen and every day I was able to walk less far and less farther due to the pain continuing to increase. It was depressing.
I know I sound pathetic but I'm so scared and don't want to endure this pain all over again. Tamoxifen for me was a nightmare, I couldn't live. I don't want to go back there. Anyway, I know what you are trying t say though and thanks for that. I will do my best to continue to take each day as it comes. I've lived that way since I was 13, I can keep doing it some more.
As far as the lump go, you are right, most likely it's nothing to worry about, however there is a caveat with that since I just started Zoladex, it is KNOWN to cause tumor flares in the first few weeks.
Dani - Thanks for cosigning on with my plan. So far so good!
My MO tried Gabapentin last time, so even though we didn't discuss it at the appt, I'm guessing that she would give me a new drug to try since the Gaba was unsuccessful? Fingers crossed. I'm happy to hear that the Effexor seems to be helping for you a little. That's a good sign. I wonder if your MO might give you something like Provigil or Concerta for the fatigue? I shared these studies on another post earlier but maybe it could help you too. Salamandra and LeWhy were the ones that mentioned it somewhere along the lines. I've been keeping it in my brain in case I have the fatigue set in again like before.Narcolepsy Drug Fights Cancer Fatigue (Modafinil/Provigil)
"Provigil Could Benefit 30% to 40% of Patients Who Suffer Debilitating Fatigue, Research Suggests"
A pilot study evaluating the safety and efficacy of modafinal for cancer-related fatigue
"In this pilot study modafinil was well-tolerated and effective for fatigue in patients with cancer. Improvements were also seen in mood, quality of life, and functional status."
Drug therapy for the management of cancer-related fatigue (Ritalin/Methylphenidate/Concerta)
"Fifty studies met the inclusion criteria. Six additional studies were identified since the original review. Only 31 of these studies involving 7104 participants were judged to have used a sufficiently robust measure of fatigue and thus were deemed suitable for detailed analysis. The drugs were still analysed by class (psychostimulants; haemopoietic growth factors; antidepressants and progestational steroids). Methylphenidate showed a small but significant improvement in fatigue over placebo (Z = 2.83; P = 0.005)."
I couldn't get past the pay wall here, but this article "Cancer-related fatigue: Treatment"(Carmen P Escalante, MD 2018) has a list of References that is VERY LONG and very informative about cancer treatment related fatigue and studies that have been done to evaluate various methods on how to manage it: meds, acupuncture, yoga, acupressure, mindfulness, cognitive behavior therapy, exercise, and so on. I spent at least 20 mins looking before I finally decided I should get myself out of the rabbit hole! Interesting stuff to be sure though!
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Hey Spoonie- you are NOT whining-that must be a huge psychological hit
on top of the physical pain- to know that in one day you couldnt walk 1/8 th
of the distance-i really hope
that your MO can offer some hope as
well as any remedial help for bone
pain- perhaps your situation is
one where they are trying best alternatives
until right “ fit” for you- if things become
too unbearable- i really believe they will
help you as best they can- keep us
posted- sending hugs0 -
Thanks Cassie. It really really is a huge hit to the brain.
Thankfully like you say my MO will work with me to figure something out, i have no doubt about that. It's just a matter of finding something that works to mitigate the SEs so at some point I can get on Arimidex. I'll be calling them, like Edj3 suggested, tomorrow.I'm so glad to have you all to talk to you, as I just got off the phone with my mom and though I love her tons it just makes everything worse. I'm sitting here crying.
She doesn't understand and doesn't really listen, just trys to solve it or explain it away. I had to tell her that no mom I'm sorry but these are not menstrual cramps like you used to get that hurt your back or the kind of cramps in the back that you had when you were pregnant with me. These are the same kinds of pain I've only had while on Tamoxifen, nothing else has ever made me feel this way. A 5 minute call left me exhausted and wishing I had someone here in person that could just hug me and tell me it's going to be ok, rather than try to explain it away or on the other side of things flip out with worry. It goes either way with here. Love her and I know it all comes from a good place and she's scared too. Ok, done venting. Lol all thanks for reading and for being my second family. You are all amazing.
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Hey Spoonie,
I'm so so sorry the AI is hurting you
You have been such a tremendous source of support and comfort and I wish you did not have to deal with this!Maybe the panic is your body's way of channeling fury, both at the drugs that are hurting your quality of life and at the fact that you can't tolerate them. That's worth some anger.
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Oh, Spoonie, I also chime in sending you love and support. I am like your mom! Sometimes I don't know when to shut up and just listen when my own DD tells me her woes.... I can imagine your frustration. We all wish we had a magic wand to help you.
You have more to deal with than is fair in life, for sure. When I your posts, I can see that you are a good self-advocate. I also keep sensing from how you describe things that you do have great inner strength and wisdom. Sorry you're having to mine that so much, and sending you warm wishes to solve this and move forward.
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Salmandra and HikingLady - Big hugs. Thanks for the love and support. I made it through last night, thanks to everyone offering their kindness. My parents are coming over today for a visit, so hopefully that will lift my spirits a bit.
I spent 30 mins on the phone with my Dad last night and he continues to amaze me. When I first began this BC journey (even though I am Daddy's Little Girl forever
) I figured I would be leaning on my Mom mostly, as Dad might not know how to deal with things. Turns out my Dad has been the best cheerleader for me since last year. He just listens, reminds that I'm doing all I can, to try to stay positive if I can, and to point out the amazing things I am doing and finding in life, even with BC around. I hung up after the phone call feeling much better. Obviously the anxiety and worry is still there, but it felt so good to have someone listen and understand. Soooo it looks like I'll make it through another day, as my Dad is often fond of saying. I'll keep everyone posted on what I hear back from my MO regarding the resurgence of the pain so soon and the new lump. With it being Friday I may not hear back till Monday, but I will survive. I've been through worse.....
Which is something I should've reminded myself about last night but sometimes fear just sets in and theres' nothing for it but to walk through it.
So here is my "something worse", if anyone wants to hear a story:
I have Chronic Lyme Disease. Have had it since I was 13. Long story short, just for background, I've been treated with IV antibiotics through a Hickman right into my heart, more times than I can count. I always "get better" but then relapse within a year or less. Anyway, one of my symptoms that I dealt with was chronic Strep Throat. In 2003, I was 26 I think, and I'd had a case of Strep for about 9 months straight. They'd treat me, it'd go away, and then be back in a week or two at most.
They finally said my tonsils had to come out. Had surgery. No issues. My mom came to stay with me for a few days (during surgery and to be home during recovery). Thankfully she was there because on my Day 2 home from the hospital, I woke up from a nap, dreaming that I was drowning. Sure enough, I really was. I woke up to find that my throat had torn open while I slept and blood was pouring into my throat. Mom called the ambulance. They arrived in under 10 mins. The ride to the hospital took 15 mins. In that time, since the I was trying to keep from choking on my own mix of liquid and partially clotting blood, I'd filled up 3 containers the size of KFC bucket. OMG. I was freaked out. It was hard to breathe.
We arrived in the ER. Immediately rushed into see dr. I'm allergic to most pain killers and apparently it was going to take about 15 mins for the pharmacy to get a injectable med to me that wouldn't cause a reaction. The dr said I didn't have that long, that he'd have to cauterize my throat without the anesthesia. There was nothing to be done for it, so they sprayed on some local I guess, and the last thing I remember is the sound of the torch and then the smell of my own burning skin.
Mom said I "went away", turned white as a ghost, and then I promptly passed out. Next thing I know, I wake up in the hospital after having emergency surgery to close my throat back up since the ER intervention did not work. I have no memories of anything in that space of 10 hours. I'm thankful I passed out. I still have nightmares occasionally about that little surgical torch, the smell of numbing spray, and of course my poor skin.
Sooooo yeah, if I can live through that. I can do pretty much anything, or so my family and friends like to tell me. LOL. So yeah, I'll be ok. Today is just today. Tomorrow will take care of itself when it gets here.
Hope you all had a great 4th. Thanks again for being here. I'm grateful beyond words on a regular basis.
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Spoonie77 !!!!!
Thank you for sharing all that. I have a dear friend who also lives with Chronic Lyme Disease and its many challenges in her life. You obviously have amazing inner strength, and you've been through a lot of fire. Figuratively, of course, but also LITERALLY, now that we've heard the cauterization drama! You're living your life and managing all these health challenges, one thing at a time. Sounds as though your parents are loving and supportive, and we're all here, listening and caring. Hugs to you.
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Oh my goodness! Spoonie, I am so sorry to read your posts from the last few days. What a crushing disappointment to have the Zoladex cause so much pain. And the idea of tumor flare-ups is weird and scary. I'm glad you found some information about it.(Doesn't it just figure that you get the very rare SE?) I did read in that same paragraph that you copied for us that Zoladex might cause temporary bone pain...so let's hope that means just a couple of days and that tomorrow will be much better.
Nighttime fears are so hard. When I have a lot of worries it's hard to keep myself calm in the middle of the night. Even when you tell yourself that things will be better, or easier to deal with at least, in the morning, your mind just goes crazy. Here's hoping for a peaceful night.
Good wishes to all.
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GoKale4320: after I found out about my broken ribs from a CT scan for my liver, I Googled broken ribs from radiation and found lots of info. I didn't think to check for shoulder breaks. I was beyond livid when I found out about my ribs and sent an email to the patient advocate at the hospital. I did get back a reply that said she would bring it up to the dept. Yeah, right! I also am concerned with taking an AI. It affects your bones. So if I already have weak ribs from the radiation what is the AI going to do long term? I decided to stop the AI this week. I can't take the side effects. Tough decision. I am going to have a DEXA bone scan next month but that only looks at your spine and hips. Not looking forward to my next appt with the MO.
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Spoonie77: I too am very susceptible to side effects from many drugs. My Mom was the same way. Tylenol damaged her liver. She had bleeding problems whenever she had surgeries although her blood clotting was "normal" -- she was allergic to sulfa drugs. I have a reaction to Demerol. The doctor prescribed Fosamax years ago since I was menopausal. I took one pill and had chills and pain. I had to sit in a tub of hot water for hours while that crap wore off. I told the doctor and he said "it couldn't be Fosamax" -- I looked online and guess what?? Fosamax CAN cause flu like symptoms in SOME people. I can't take Nyquil, Benadryl or most cold medicines. They make me jittery. The last 2 years my blood pressure went way up due to the stress of breast cancer treatments and other things. The doctor prescribed Lisinopril. I took ONE pill the first night and the next morning I got up and couldn't straighten out both my knees. I had to walk "hunched over" like an ape. I sent him a message online and he replied "it can't be the Lisinopril" -- "you must have hurt your knee" -- I replied that it was BOTH knees and I didn't do anything to hurt them!! He finally gave in and changed to another prescription which I can tolerate. And guess what??? I looked up the side effects online of Lisinopril and it said it can cause joint pain in some people. (that would be me!!). I am reluctant to take any new meds. When I have surgery I have to make sure the anesthesiologist listens to me when I say that they usually give me too much anesthesia! They look at me like I'm crazy but 3x I have had trouble waking up from procedures. One anesthesiologist recently really listened and explained why it happens to me (and others). He said my body metabolizes things much faster than other people and he will just "slow down" the anesthesia. I felt like hugging him!! Finally someone listening! I am sensitive to most pain medication. I can take an aspirin and get sleepy. 1/2 a pain pill works fine for me. My sister is the opposite. They have to give her twice as much. (she woke up during an operation!). So don't feel bad about sticking up for yourself! You are a unique individual and there are many of us out there. Just this week I have made the very difficult decision to stop the AI. I feel like I"m 100 years old. Not pain exactly just weak and tired and my bones are achy. I can't take the depression, the insomnia and now my hair is falling out. My Mom was on Tamoxifen years ago after breast cancer and was one of a very few women who developed blood clots. After my ordeal with the radiation side effects, I got the rib pain for 6 weeks and just when that pain started to ease up, then I got sciatica for 6 weeks. I think it was caused by inflammation in my body from the radiation. Worst year of my life! I did start on CBD a few months ago and that is helping. I don't think I could have stayed on the AI at all if it hadn't been for the CBD. It just eased them a little, but I can't take the side effects anymore. Sorry about the long post but wanted to make sure you realize there are other women like you. Don't let them tell you otherwise!! So thankful for this forum. Hugs!
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HikingLady and LPLibraryGal --> Thanks for your continuing kindness. How were your 4ths? And your weekend? I sure hope you were able to get out and enjoy some good weather and friends/family time. My parents visit was nice. We started watching the new series on HBO "Chernobyl". Wow, great acting and a really riveting miniseries. I'd recommend it to anyone looking for something new to watch.
In other news, it's been an "interesting" few days. I think the bone pain was temporary, or at least it's let up a bit. So that's a good thing. Maybe like you mentioned LPL it had to do with the flare. Who knows, all I know is I'm glad I can walk the dog again. I do know in general my bone pain has increased but it's manageable, so far. Thankfully that's let my fear and anxiety decrease a bit.
However, I wish I could say the same about my new lump and the pieces I've put together because of it.
Here's the deal....ever since RADs I've had nipple issues that everyone told me were related to RADs - ie flaking skin, scaling skin, itching & tingling, yellowing crusts now and then, despite keeping it hydrated, it varies between sticky/oily/dry, looking like eczema, but what if that has all been Paget's? Shouldn't all of those skin issues be gone by now, it's been 8 months since RADs ended. Yet in my mind I didn't pay it any attention because I was "oh, it's still from RADs". I know Pagets is RARE RARE RARE but still. The picts I have taken of my nipple over the past months look very much like those on the net. I never once thought to mention it to my MO nor do research on my own about what I was seeing. I just said it was RADs and let it leave my mind. .
The lump itself is definitely an early Nipple Adenoma, it looks like every single picture I can find of it. But of course, Google isn't my doctor and I am not panicking, lol I am just determined to get an answer sooner than later. First thing tomorrow I will be sending picts of my my nipple issues/lump and asking if they want to see me now versus at my next Zoladex injection in 3 weeks. I'm guessing they will want me to come in this week. Hopefully my MO will have a plan of action to cross off the scary things of the list and let me get back to a little peace of mind.
I'll keep everyone posted.
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Spoonie77 After rads, my skin took a good year to heal completely, especially around the nipple. The target area was 1" above the nipple. There were many evolutionary stages to what all the skin went through, and after a year it settled down to mostly seeming like normal, healed skin everywhere. For about 10 more years, there was occasional flaking on that side, just on the nipple.
The anxiety and worry about this is costing you a lot. You need to feel the best you possibly can, including mentally, to get through all this. Sounds smart to send a photo and see what they say, for sure. If it were me, and if I were super worried, I'd push for being seen by my MO right away, not wait three weeks.
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Ugh a year to heal and still flaky 10 years out? My tumor was behind my nipple and while I know my skin's done well, it's clearly pissed off. Guess I need more patience then.
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Seriously HikingLady??? Wow. That is a very very very long time. And your team says that's normal? Like EDJ3 said, I need more patience in that case!
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Oh, Spoonie.... I’m sending much love and support to you! You have been through SOOOO much. You are an amazingly strong person who has been here for so many of us. I will add my two cents’ worth in about your skin issues on/near your nipple. I finished rads at the end of October, and my nipple was dry and scaly for most of the winter. I should’ve bought stock in Aquaphor! I wonder if your other health issues mean you heal more slowly? Just a thought.... As far as the lump goes, I would keep an eye on it for the next few days. If it doesn’t improve, or if it would ease your mind, call your MO’s office and have it checked out.
Dani, I started Effexor in early December for horrible hot flashes. It helped those pretty quickly. After 4-5 weeks, I noticed my anxiety (low grade but chronic, what I had thought of as “just me”) start to improve. Stick with it! It does come in an extended release version; I wonder if it would work better for you?
Friday was the one year anniversary of the day my PCP called to tell me my needle biopsy was positive. I’ve been thinking a lot this weekend about how my life has changed during that year. I do know that it would have been a much harder year without all of you. The wonderful women on these threads have given me so much, and I’m so grateful for each of you. I’m sending all of you my love, gratitude and support!
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Thank you GreenHarbor. That's all very kind of you to say. Thank you too for sharing how your nipple behaved after RADs. It does make me feel a bit more at ease hearing that others did take quite awhile to return to "normal". And you're right, I do, in general heal more slowly. Taking more iron and zinc has helped a little, since my labs were low, but maybe not enough. I guess that's why my nipple issues weren't even on the radar to maybe have a concern for. I just was on autopilot. At any rate, I just sent a message via my MOs portal with 2 pictures attached and asked them what they would advise. Now I wait and see what the plan is.
Oh and I heard from Pebbles, I had messaged her to check in on her. She says hi to all and that she is adjusting to the Tamoxifen pretty well, all things considered, and busy with life and the furry clan. She plans to stop in sooner than later and say hi but she wanted me to say that she's thinking of us all and hoping everyone is doing as best as can be. And of course Domino and Tucker say HIIIIIiiiiii!
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Spoonie, I finished rads in early December and my nipple is still shrunken and dark. I can feel a lump behind it. I had assumed it would just stay that way forever but my RO insistsit will go back to normal eventually. So rest assured, you are not the only one with an ugly lumpy nipple.
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I am so ready to ditch the Tamoxifen! I have no energy! Spin class once gave me energy, now it wipes me out! I hate my life now. I miss the old me so much. Give me the stats again. I have no uterus or ovaries and no longer taking hormones which, I believe, caused the breast cancer. I think I need the little estrogen I have left. Tamoxifen has taken a young, active vibrant 61 year old and turned her into an old woman. Plus I am getting fat! They say it is not the Tamoxifen but I have been me for a very long time. Yes it is the Tamoxifen, I know it.
Do I really need that Tamoxifen or is it causing more problems than providing benefits
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Hi SheWra- i am 63 and have been on
tamoxifin 3 weeks with no side effects
yet-
I delayed , by 2 months, taking it-
I am an exercise addict and always
have been and did not want to take
it because of se- given my very
small benefit of 3% for local
and 1 1/2 % for mets. - seems like a huge
price to pay for such a small percent
and i just dont know if i am damaging
myself unnecessarily-
are you at low risk as well?
I have not had my ovaries/uterus out
but know an issue could potentially arise-
quality of life is my main concern-
If I get a hint of any side effect that
destroys this- i plan on tossing the tamoxifin- if your risk is also low-
( which i dont know)- i totally understand
your thinking- For me- I am just starting
down that road- but my mind is already
made up as to my plan re: quality of
life- if i had ahigher risk % i may think
differently- or not-
how long have you been on tamoxifin?
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Okay everyone wish me luck. Oncology called. They want to see me stat because of the two nodules/lumps on my nipple and also because of my other symptoms the tingling flaking skin and crusting occasionally. I have an appointment with my oncologist in an hour. I'm trying to remain calm because it seems to me that usually oncologists schedules are booked and they made time for me to see her. I don't know maybe they had an opening. Anyway I'm a bit nervous... Kind of like a cat with a long tail and a room full of rocking chairs. I'm guessing from the phone call that I'll be up there most of the afternoon getting a mammogram and an ultrasound. wish me luck. I'll keep you guys posted.
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spoonie--sending good thoughts your way. Let us know how it goes.
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Fingers crossed, Spoonie!!
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Good luck spoonie, keep us posted!
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Oh Spoonie thinking of you so much.
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Thank you everyone for the luck and thoughts. I wish I had answers but unfortuantely just more of a waiting game to get through.
I have to see my Surgical Oncologist in the next week or so. They will handle things from this point.
My MO was very glad that I brought the issues up to them and that yes, there is a mass there that shouldn't be there. She agreed that it is concerning and that in general, yes my nipple should have healed and been beyond where it is in the healing process at this point 8 months later. She would not comment really one way or the other about what this mass on my nipple may be, she did list a few possibilities (Nipple Adenoma, Early Stage Paget's, Leiomyoma) she did say that it would be difficult for imagining to detect anything at this point. They are apparently low accuracy for nipple related issues. I guess I trust that.
She said that my SO would be better able to tell me the options for diagnosing and for treatment for what is going on. The only way to tell is to look at the tissue, and for that we need surgery/biopsy. Depending on what my surgeon thinks this is, treatment seems to be the same....removal of the nipple. Depending on if it's malignant then I'd have to go through the whole "game" again and I don't know what that would mean for RADs or anything. Uggggh. And is that a recurrence or would that be seperate from my first dx? No clue.
First things first....what the heck is it offically?
So I wait. Again.
On my way home from my MOs office, I really began to wonder if I made the best choice by going with my LX instead of MX. I hate all this worry. I know I did the best with what I could at the time, but now I know how every single thing panics me. IDK. I just know right now I'm feeling down and want answers. At least my MO let me know that a week or two of waiting to get in to see my SO shouldn't be overly concerning. I guess I will take comfort in what I can.
Thanks for listening everyone. I can actually tell you all the truth without worry, you get it. I'm so grateful.
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Spoonie77 Thanks for sharing this update. I'm sorry that there was not a magic wand easy answer for you, and now you have more waiting. Ugh! Makes good sense to consult with SO next, so you can move forward on a diagnosis. You have a lot of good questions; write those down to ask that breast surgeon. My understanding is that they can't do radiation a second time on the same area that's had it once. That's also way down the road, since you don't have a clear diagnosis. You'll find support on this community forum for whatever is ahead, for sure.
I know what you mean about second-guessing yourself on treatment decisions. All we can ever do, in life and with health issues, is make the best decision at the time, with the information we have. You did that. From your description, you have caring and skilled docs. I think the waiting part is some of the worst stuff we go through-- wondering and waiting for next steps. I send you huge empathy and cyber hugs as you get through these next waiting days or weeks. Warm and sympathetic wishes for good answers to your questions.
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I agree w/ HikingLady, glad to have some news and wish you had a more complete picture of the situation. Really, I could keep typing but just go reread what HikingLady said because that's what I feel too.
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