Starting/declining hormone therapy Nov, Dec, Jan 2018
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Spoonie, my head is spinning. SO SORRY you're going through all this. Good to stop the Z. You are a smart self-advocate. I also hope that you feel better soon, and get a few more spoons to deal with all of this. Cyber hugs from me.
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Allergic to Zoladex???? That's insane!!! Glad you've got it figured out though and your PCP is on it. OMFG this is all so...I have no words!
Your neck looks a lot better.
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Spoonie - proof in spades we all need to be our own advocates, do our own research and make choices that are right for us. So sorry you got such a frustrating response from our care providers. Glad at least that the neck is looking normal again and you have some answers to the other things.
I asked Domino to give me a really concerned look but this is what I got, so sending you furry smiles and hugs.
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his small paws... omg..
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Ok PebblesV - I want your puppy. He is the most adorable thing ever. He could be a puppy actor. Just an adorable smile.
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Cassie and giddyup - Domino thanks you! She’s a girl BTW and wanted to provide another pic of those small paws...
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Spoonie- What an ordeal! I am so glad you have a PCP that takes such good care of you! I will join in the anger for your MO’s handling of this 😤. I hope the increase in LE symptoms subside soon. Thank you for checking in. Hugs to you!
Pebbles- I really love the return of the fur baby pictures! I smile at Domino’s expressions! I love seeing her smile!
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Hi Canadaliz, How are you feeling? I was diagnosed with a fatty liver last year in March 2018 then breast cancer in Nov.2018. My primary has been monitoring my liver function every 6 months. The oncologist NP never said I couldn't take tamoxifen. I chose to take it due to osteoporosis especially in my hip. I also take pravastatin 3 days a week. This does concern me and wonder what your thoughts are?
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I saw my BS on the 7th after having my first yearly mammo on my remaing breast, and follow up US of the lump in the foob. We talked about the fatigue I am having from the tamoxifen. It was so nice to have someone actually hear me and be sympathetic. I had talked to the NP at my last visit since my BS was off on maternity leave. She asked a lot of questions about the fatigue and how it was affecting my QOL. She said that I should definitely go back and talk to my MO, and followed with "or we can get you a referral to get a second opinion, I think it would be good to have a second set of eyes look at your case and see if a different medicine would be better." She asked if my MO had offered another option and I told her he had not, just referred me to a pelvic health clinic and gave me the effexor Rx. I have to have a breast MRI next week and a stereotatict biopsy of my remaining breast the week after. I told her I would call my nurse navigator after I get through the biopsy. My anxiety is all consuming right now and can't handle meeting a new MO.
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Dani, I too am dealing with fatigue. I'm sorry you're dealing with scanxiety. Why would you have to have a second opinion look at your case to change the medication? That doesn't even make sense unless you request it.
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I had shared with my nurse navigator that I had a frustrating conversation with my MO about the tamoxifen related fatigue. He was not supportive and really just brushed it off. He wanted to refer me to a pelvic health clinic because they deal with women “going through these changes.” He mentioned several times that every woman goes through these changes. He gave me the Rx for Effexor and told me he would see me in a year. I think maybe my BS wants me to be able to talk with someone I feel I can comfortable with and feel will listen and be more responsive. She left it up to me but said I need to see someone about the fatigue.
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Okay okay I totally agree! It sounds like your MO it's just trying to get you to be compliant without any regard to your well-being. I am seeing my third oncologist at this point. Keep looking until you find someone who listens.
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Wised, do you mind sharing why you switched MO’s? No clue why this feels overwhelming except for the scanxiety that’s currently taking over. Do your doctors feel that your fatigue is related to the hormone therapy? I would love to just feel like the old me.
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I I switched because I no longer trusted my original MO. When I don't feel heard and my comorbidities are not taking into account things turn out really badly for me. What I ended up doing was asking friends to ask friends, then I asked some nurses to decide on my new Mo and it was a good choice.
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Dani I fired my first one pretty quickly, he was talking worst case before we had the Oncotype score back and his bedside manner was awful. Seemed to have no respect for what my body had been through (saw him about a month after surgery). I talked to my RO and he gave me a great referral, she only works with BC patients. I don't care that I'm "only" stage I, I want the best and someone who is on the leading edge. Your MO is someone you are going to see for years and you need to have a comfortable relationship with them. Good luck!
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Dani - How are you doing with the Effexor? fingers crossed it will help you out. is that for the fatigue? I also second the seeking a second opinion. If your MO isn't willing to listen and "hear" you, please find a new one, when you can mentally handle it. I hear ya on the scan-xiety. Hang in there. When you have some head space, give the new MO idea another look. I did. It was scary but I knew that I'd be seeing this person for the rest of my life and would have to have someone that could see me as a person, not just as a cookie cutter case. I had thought my new one was awesome until this recent snafu with the throat swelling etc, so am contemplating whether I need to find another. I think you should listen to your NP and get that referral. Sending you good vibes for your MRI and biopsy next week. sure hope things are all clear. keep us posted, ok? sending hugs.
Just a "quick" note about the ongoing Spoonie story -- while the Prednisone calmed things down and reduced my neck to NON-Hulk size, and as long as I take 4 tabs of Claritin a day, my swelling/symptoms stay away. If I don't, they come back in 24 hours like nothing has changed. Saw the NP for my new Immunologist today. There is some talk that I may have yet another syndrome, something called Acquired Hereditary Angioedema. Oh joy. Why not add another to the growing list? LOL. Anyway, waiting for labs to confirm or cross off the list. Will see the actual Immunologist mid Sept now that I've made it through their screening process. Ugggh I hate red tape. In the meantime, will be seeing my Primary on Thursday to go over any next steps she can think of or give me more Pred till this Zoladex is out of my system. Who knows when that will be, my MO sure doesn't. I asked. They couldn't even give me a ballpark number. Maybe in under 2 months, maybe longer, maybe shorter, depending on my specific metabolism etc. Ugggggh. It never ends.
Wishing you all the best and sun on your faces wherever life finds you today. Hugs and healing. Oh and GiddyUpGirl - can't wait to see those flippers! Early congrats on finally being finished with RADS!! Woot!
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Spoonie, the saga continues...I wish you all the best. I am sure you know, or will be told at some point, that getting off Prednisone must be done very, very slowly. I think the longer you take it, the longer it will take you to gently cut back on your dosage.
Dani, I can totally empathize with the fatigue...still. When I had my 6 month check up I only mentioned fatigue in passing because it wasn't so horrible and I thought it would get better. It seems that it has gotten worse since then. It's hard to know how much is due to depression (taking Zoloft but my husband is seriously ill with congestive heart failure, pulmonary hypertension, interstitial lung disease, sleep apnea, permanent A-fib and some minor things) because I am worried about him and how much is related to Femara. I haven't told my MO because I don't really want to trade one set of symptoms for a new set of them with a different AI. I just signed up for a new PCP who practices integrative medicine and I am hoping that she will be helpful (though my first appointment is not until November). I usually spend 10 hours in bed at night-reading and sleeping off and on. I wake up tired every morning. Many days, especially if I work, I need a rest or nap for an hour or sometimes more. It's okay. I don't feel sick and I can deal with it...I just don't want to
I want some energy back! I know I need to walk and I know it will help with everything. I just need to commit and make it a priority. Good luck, Dani. I can't imagine trying to work full time with so much fatigue and hope you can find some relief.Be well everyone!
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Spoonie, the saga continues...I wish you all the best. I am sure you know, or will be told at some point, that getting off Prednisone must be done very, very slowly. I think the longer you take it, the longer it will take you to gently cut back on your dosage.
Dani, I can totally empathize with the fatigue...still. When I had my 6 month check up I only mentioned fatigue in passing because it wasn't so horrible and I thought it would get better. It seems that it has gotten worse since then. It's hard to know how much is due to depression (taking Zoloft but my husband is seriously ill with congestive heart failure, pulmonary hypertension, interstitial lung disease, sleep apnea, permanent A-fib and some minor things) because I am worried about him and how much is related to Femara. I haven't told my MO because I don't really want to trade one set of symptoms for a new set of them with a different AI. I just signed up for a new PCP who practices integrative medicine and I am hoping that she will be helpful (though my first appointment is not until November). I usually spend 10 hours in bed at night-reading and sleeping off and on. I wake up tired every morning. Many days, especially if I work, I need a rest or nap for an hour or sometimes more. It's okay. I don't feel sick and I can deal with it...I just don't want to
I want some energy back! I know I need to walk and I know it will help with everything. I just need to commit and make it a priority. Good luck, Dani. I can't imagine trying to work full time with so much fatigue and hope you can find some relief.Be well everyone!
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So even though I have not been experiencing any fatigue on tamoxifen, Domino and Tucker wanted me to post these pics to say that they completely empathize with all the ladies experiencing fatigue and SEs and 'scan-xiety' (that one I AM experiencing!) and that their advice is to just take a moment to let yourself relax like this:
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Ladies--I haven't been posting here much but do follow along with the thread. Spoonie--I feel so bad for you every time I read one of your posts. Sending you all good thoughts for a resolution of. . . well. . . *everything*. My energy level has been pretty low--not sure if it's fatigue, or some combination of the AI, mild depression (definitely have that), plus the fact that I HATE THIS TIME OF YEAR. I never liked the heat even when I *did* have hormones, but around now it's just gone on too long. I can't wait for cooler nights, and maybe even a few cool days. I'm so tired of being hot every single time I walk out the door. I'm wondering if I should move north after I retire.
Just re: the AI--I have to say it's going pretty well, but I do know I'd feel different (better!) if I weren't on it and the thought of 4+ more years on it pisses me off. I'm just cranky these days--waiting for my hair to return to normal, waiting to get off the AI, . . . . I think this is pretty common--you focus so much on active treatment while you're in it and then when it's <finally!> over, you have the time to realize you're nowhere near finished with this stupid stupid disease. A time when it's really completely gone from my life seems so far away. <sigh>
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Wow. Thank you Ingerp for translating my pissy mood for the past week. Seriously, now it all makes sense. Off to work on that because I may have to take pills for 7 1/2 years, but I refuse to be in a pissy mood over CANCER. EFF YOU CANCER. Piss off yourself.
I feel better....
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Spoonie - I was researching some blogs for my auto immune disease (dermatomyositis) and came upon a blog called "Life in the Auto Immune Lane" and it said something that caught my eye, the blogger was describing her life and said:
"Spoonie/Chronic/wtf Life Style" she has Amyloid. Described 'electric shocks & a sort of G force" that make her want to lay down all the time.
When I described the exact same thing to my Doctor (before I ever read this) - she thought I was nuts.You are not alone.
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Hugs Spoonie!
I'm in a pissy mood too! I feel like I have perpetual PMS, no joke. Is anyone else having severe insomnia? I know it is the hormones because I used to do this the week before my period... I'm starting some melanoma tonight to see if it helps.
Love to all you beautiful ladies! Special love to Tucker and Domino!
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If waking up at 4 and being unable to go back to sleep until about five minutes before I'm supposed to get up, then yes, I have insomnia too. And it's definitely worse when my period (or what counts for a period lately) is impending. That's the time I get hot flashes too.
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Wised it is interesting that you brought this up, I'm having awful PMS 24 hours before I start. It has been so bad the first time I thought that maybe it was a gallbladder attack but it didn't make any sense based on what I ate. Then it happened again the next month and last weekend which would be around my time of ovulation I had pain and discomfort in my lower abdomen. I have an appointment with my MO tomorrow, we will see what she says. I really don't need to have debilitating PMS even if it is for a day each month.
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Omg, my sleep deprived brain! I wrote melanoma instead of melatonin! I'm post menopausal, but I feel for you! The melatonin did not work, btw and I'm starting to feel a bit desperate for sleep.
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melatonin- there is extended-release formula that may help.
Another sleep aid that helps me is Jamaican Black Castor oil applied to my eyelashes and eyebrows. It’s really for eyelash and eyebrow growth, but it helps me sleep, too. You can also rub some on your scalp the day or night before you wash your hair for hair growth.
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Gokale, Jamaican black castor oil is something I have not heard of before, but I am willing to try anything at this point. I just can't get my mind to shut down.
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kale, does that oil also help with thinning hair ?
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