Life on aromasin
Comments
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bc101, I empathize with you. My DH went in last week for a "routine" knee replacement and came out with 2 blood clots in lungs and on blood thinners and full-time 0 2. I'm fearful he will never recover or always be on 0 2; previously he was completely healthy other than one trashed knee joint so you can bet I'm regretting even supporting him on this knee replacement.
I hate when doctors act like Xanax is heroin. When it's used for what it's supposed to be used for (you) and the patient isn't abusing it (overuse, motivated to stop taking it when the condition that requires it is resolved, etc.) these kinds of drugs are often the best defense against a more serious problem related to long term anxiety. My daughter needs Xanax to fly and she travels a lot for work. Her PCP's nurse acted like she was a drug addict for asking for 10 tabs.
Get a new primary care physician, one that will listen and empathize.
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I had insomnia from anxiety for the first year or two. I never slept because I was too busy on Dr. Google. The insomnia I have now is clearly from the Aromasin. It's a different experience. I was taking time released 5 mg. melatonin prior to the Aromasin but that does nothing for me now.
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Thanks for the words of advice, claire. I really need to find a good PCP, but they are in short supply, it seems. Hugs to you and your DH.
Warriorwoman - I agree there are differences between the two types. I had the same problem with Dr. Google in the beginning, but thank goodness I'm over that stage. I figure I get by on about 3 hours of sleep some nights, depending on when I go to bed. I'm trying to get back into the job market and wonder how I'll ever be able to function between the insomnia and memory issues....
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Just want to add something about taking Xanax. Its a drug that creates physical and mental dependency very easily. Also it is really difficult to come off of it. This is why it is not recommended for long term use. A sleeping pill or an antidepressant that takes care of the anxiety is preferable. Good luck to all of you in this journey....
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I might add to the last post that anti-depressants are equally hard to wean off of as well. Read "getting off effexor" posts on this board and see.
I don't see a problem with a bit of LOW DOSE Xanax from time to time to manage anxiety. And not everyone becomes dependent on it if you realize it's a temporary relief and eventually you'll find ways to relieve anxiety without Xanax.If it is a generalized anxiety disorder that has been dx by a professional, then other meds might be in order but the type of SSRI has to be chosen carefully since many interfere with our AI/hormonal txs.
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Which antidepressants interfere with AI's? That's why I am afraid to take any. They haven't done any studies for us on AI's, just for those onTamoxifen. Although .... I read of a recent study that found Paxil increases estrogen activity. Scary.
I've heard the warnings about xanax from my nurse. I only take it if needed - kind of going through a crisis period right now. But yes, thanks for the heads up. I realize there are other ways to manage my anxiety. I felt my best when I was doing Yoga 3 x week, mindfulness meditation everyday and walking regularly. When DH got sick I quit taking care of myself. I need to get back into a routine before I completely fall off the edge.
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The only ones that are safe, from my recollection, are Effexor and Wellbutrin. Effexor, even at the lowest dose of 37.5 mg. affected my ability to lose weight but it was the only one my MO would let me take for hot flashes after chemo was over.
SSRIs are also notorious for causing sleep disturbances. Look up the above drugs and check the side effects.
Right now I'm taking a combination of 5 HTP for mood, Theanine for relaxation during the day (doesn't wonk me out), getting regular exercise and making sure my sleep hygiene is clean (same bedtime every night at 9, no screen time after 8, since I go to bed at 9, turn the lights down lower, sleep in a very cool room with blankets, etc.)
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PS I completely understand BC101 about taking care of ourselves. I have a tendency to let myself go to care for others. I explained to my husband, who's recovering from blood clots from a total knee replacement, that if my body isn't straight, my head isn't on straight and I'm no help to anyone.
Claire
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Hi everyone. My name is Jessica. I posted this on the hormonal therapy thread yesterday but didn't receive any responses, so I figured I would try to post this here since my question / concern is specifically related to Aromasin.
Three years ago my mom was diagnosed with Triple Positive Stage 3 Invasive Ductal Carcinoma at 44 years old. After her second round of chemotherapy, her period went away and she has been in menopause ever since. For the first almost 3 years post treatment, she was on Tamoxifen however since her period did not return and her blood levels always showed very low estrogen levels, the oncologist switched her over to Exemestane (Aromasin) as of about 5 months ago. The doctor still tests her estrogen levels at every follow up appointment, and today for the first time her estrogen levels came back high. They're at 269 and the doctor said that she would like to see it below 90. The doctor is not worried however is referring her over to the gynaecologist this way she can get a pelvic ultrasound where they'll examine her ovaries and her uterine lining. My mom opted to have her ovaries removed (this is something she has wanted to do for a long time but it has not happened yet since she is also in the midst of reconstruction) but since her levels today came back high that is something she will be doing right away. I am extremely worried. Ever since she has had her cancer diagnosis I've suffered with tons of anxiety and after today's appointment I'm feeling extremely sad, down, and terrified. I am posting this because I was wondering if anyone on this site has had a similar experience and/or if this is something common. Again, her oncologist (who is excellent, thorough and whom we trust completely) is not worried, she is being proactive about the situation and I am assuming once her ovaries are removed my mom will follow up with her, but I am still feeling so scared and so down. If someone reading this has had an experience like this, or knows someone who has had a similar experience, or even just has some words of encouragement and wouldn't mind replying I would really appreciate it. I can barely sleep and add. Google scares the living crap out of me :(Thanks so much.
Jessica
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Hi Jessica - First of all, stay off Google - you'll scare yourself silly - many of us here at BCO stay off Google for that reason and also because a lot of the information is old. As for the estrogen levels - sounds like your Mom's onc is on top of things. Might it be possible for you to have a talk with a social worker or a counselor to help alleviate some of your anxiety and depression? Come on here anytime you want to vent and let your Mom know where we are too. Hoping someone with Tamox and Aromasin experience will come on soon and give you more details on what to expect - I was on Aromasin as part of my treatment a year ago and it was a "good" drug (low side effects).
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Thanks for replying and for your kind words, Sandy. I know Google is horrible sometimes, her onc gets upset that I go on there too lol. Sometimes I can't help it. The onc is on top of things and she's honestly so fantastic, not only with my mom but with me too. She emailed the gynaecologist right away when we were in the room so I'm assuming my mom will be receiving a phone call sometime this week. Again, my mom's doctor and the nurse practitioner who were both in the room with us were not worried at all. I asked them if this is a sign of mets or if this means something is growing or spreading, and calmly they both said no and that my mom is gonna be okay. That should be reassuring enough for me but like I said I'm just so scared. The high estrogen levels were so unexpected and 6 months ago her levels were extremely low. I'm scared the Aromasin is not working if my mom is no longer considered menopausal (even though she has no period and has all the menopause symptoms, her blood work shows otherwise). The doctor was trying to explain that all to me cus I asked her if that means it's not working but to be honest I can't remember all the medical stuff she said because I was having a little bit of a meltdown, but she just told me not to worry.My mom's pathology showed that her tumour was 98% estrogen driven. My biggest fear in the world is for this damn thing to come back. I don't mean to sound selfish but honestly I don't know how I'll be able to deal with that again. I am so close to my mom. I'm 23 years old and I have a younger brother, my parents are divorced (however they have a great relationship and my dad is extremely involved especially when it has to do with my mom's health, I'm very close to him too) but it's hard because I live with my mom and even though she is such a strong positive woman, I am her support system (as she is mine) but I just feel like this entire thing has taken a huge toll on me and the last 3 years have been so tough. Like I said my dad is very involved but they're divorced so he obviously doesn't live with us, doesn't come to her appointments (unless it's surgery etc.) so I feel like I'm handling some of these scary things (test result appointments, follow ups) all on my own, even though I'm not alone if that makes sense because I have an amazing mom who has been helping me through this as well and my dad. I know I don't have to attend these appointments but I can't possibly let my mom go through that on her own either. I'm just feeling torn and maybe a little afraid to admit that I'm not sure if I can handle all of this. It's not good for my mom to see me this way but despite my own feelings and fears I just feel like I need to be and want to be there for her because she's my mother. I'm sorry I am venting and it probably sounds like I'm throwing a pitty party, and this post is getting long but it just sucks because once you hear one thing that's a little bit negative it just brings you down. That's how I feel anyways. I've gone for help before and to be honest it hasn't helped me all that much. I feel like nothing can help with my fears and I feel like a lot of times they speak to you in textbook format and tell you to try not to worry unless there's something to actually worry about. Well even though that makes sense that's difficult for me to do since every headache and pain and cough my mind goes to the worst thing unfortunately. I went for help at the beginning of her diagnosis but perhaps it would be different now if I tried again. I do let my feelings out though to other sources (my dad, close friends and family) so it's not like I always bottle this up inside but I just feel like a lot of people don't truly understand, which I understand because they've never been in my shoes. This whole thing just sucks. Thank you so much for listening. It means a lot.
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Hi J92,
"Ever since she has had her cancer diagnosis I've suffered with tons of anxiety and after today's appointment I'm feeling extremely sad, down, and terrified." When my husband had cancer years ago I was left with the exact same feeling. It never went away but I recognized it as PTSD and knew how to acknowledge it and found ways to tell myself a different story when I had those feelings. I recognized what cues there would be (for me, it was seasons--the month he got diagnosed, etc. etc.) that would trigger anxiety.
I'll link some PTSD infor for you; it isn't just for soldiers. You have caregiver's PTSD, it's real, and can really stop us in our tracks at times. Been there done that. Now I have it again with my own c dx. But we learn to live inspite of it, and I try to simply "look back, but not stare", if you know what I mean.
Dr. Google is no help unless you know how to sift through the b.s. and evaluate credible sources for accuracy, which takes practice. Oftentimes the research we read about online is years and years old, and outdated.
It's possible your mom can be moved to another AI that will work better! She has choices. And can she have her estrogen tested again very soon? I'm not a hormonal expert, but I wonder if her estrogen spiked on the day she had her labs. It doesn't mean she is flooded at that level 24/7.
Anyway, I hope I gave you a bit of understanding. The first link is about caring for elderly sick parents, and that's not your mom, but addresses the fear and anxiety caregivers experience. The second also relates to what we've experienced.
http://newoldage.blogs.nytimes.com/2013/01/30/for-...
http://thecaregiverspace.org/ptsd-caregiver/
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(edited to change typo: goes to does!)
Dear Jessica,
I am so sorry you and your Mom have been through such a rough time. It is indeed hard not to stress out over someone you love and your Mom has a very loving daughter.
Co-inccidently the first part of your Mom's story is very similar to mine. I was 44 at DX, highly ER stage 3 IDC. I was on tamoxifen for 3 years then switched to Exemestane (Aromasin) last August, which must be around the same time your Mum switched.
I echo what others have already said about Google. When it was about my own cancer I had no prob staying away from Google.
I suppose that was because to a certain extent I was in control of my own information - I was meeting the docs, hearing my own pathology, recommended treatments, having the treatments etc - I really didn't need any info from Google.
When a friend of mine got a recurrence it was so different. I was all over Google - in fact that is how I ran across this site.....
I was trying to understand what had happened to her and how and why. After a time I realised the people helping are her family and other loved ones and her medical team. Not Google.
Then my DH was diagnosed with a stage 3 agressive prostate cancer just 2 years after me, in 2014. Again I was all over Google. The chance of avoiding recurrence stats for his cancer were TERRIBLE, worse in fact than mine (which I had accidently run across when Googling after friends recurrence). DH's chance of avoiding recurrence was, I think on the Han and Partin tables, (some prostate tables) on Johns Hopkins website as woefully low as 10%.
I had to realise truthfully none of us have any guarantees about length of life, not Bill Gates or anyone. Cancer survivors (and others with serious illness) are likely to be a bit more aware of the elephant in the room, but every one of us has an elephant.
I would take your Mum's MO's words at face value - she is telling you she is optimistic. That is the best place to be. Google is not about your Mom (or my DH) The stuff on Google is averaged figure from tonnes of people. It is not about your Mom.
(Also even with lousy stats it is a fact that some people have to be the people in the good stat.)
Your MO is telling you the truth - high estrogen does not equal mets.
Remember also that that your Mom has had surgery to cut the cancer out. The intention of the surgeon is that that cancer is GONE. There may be no cancer cells in your Mom's body anywhere. The estrogen is simply estrogen.
Try to work only on the facts, as they become available.
If other facts become available you will deal with those at that time.
I know it is hard not to grab the ball and run all the way to the end of the court but trying to deal only with the facts puts you in a place of much more calmness and control. You have received a fact that your Mom's estregen has risen. Her medical team are moving to gather more information and decide the best choices for managing that pesky stuff. This is good.
Truly wishing you and your Mum the very best. She is so lucky to have such a loving daughter.
XXX
Susanna
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Take heart in the fact, too, that your mom's cancer is estrogen positive. Easier to treat, according to my MO (she grinned from ear to ear when my pathology revealed I was about 150% estrogen positive!). She said it was a huge "plus".
Claire
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Jessica---I've been on Tamoxifen since Feb 2013, so almost 3 years. In the spring of 2014 at my annual exam, I asked for a baseline vaginal ultrasound because I knew what Tamoxifen could do to my uterus. That exam showed that I had thickened lining with cysts and fibroids. I was 50 with sporadic periods which had always been the case with me. My gynecologist tested by estrogen levels and they came back 749! I freaked out but he wasn't worried at all. He said that the hormonal therapy can cause spikes in numbers as can just a specific day of the month. We watched my uterus for another 6 months and then in Jan 2015 I had a hysterectomy and ovary removal because A) my lining was thickening just a bit each ultrasound and
peace of mind. Best decision I made through all this. I'm a year out (yesterday) and feel awesome. I have a few hot flashes here and there and struggle to not gain weight but otherwise doing really well. Your mom's gynecologist knows what she's doing I'm sure so just trust her. My gyn said there was absolutely no correlation between estrogen levels and cancer returning. It's just a side effect of hormone therapy and your mom is doing exactly what she needs to for her health. As a family friend told me who's one of the top oncologist "Just know that you will probably outlive your peers since your breast cancer diagnosis means you will get top notch medical care for the rest of your life, much more so than most women of your age group." I remember that whenever I'm feeling like I'm going to a dark place. 0 -
First of all let me say that recent studies are showing Aromasin is very successful in treating women with ER/PR positive breast cancer. Honestly, I didn't know you could have your estrogen levels measured. My doctors never suggested it. To me it sounds like trying to monitor blood tests for tumor markers, and those are proven to be inaccurate. Most doctors don't do these tests.
I'm so sorry you are dealing with this alone. You are going through a crisis, that's for sure. Learning how to manage in a crisis is a skill. We are not born with these skills, but it's truly is a matter of survival for you as a caregiver to learn how to manage stress. The anxiety about recurrence and "what if" and the uncertainty is something I've really struggled with since my diagnosis. It gets better, although that being said I suspect PTSD is something I'm still struggling with. I've had depression and anxiety all my life, so I think it's been harder for me. Being aware of this and getting help, for me, is a matter of survival.
I know what you're going through with your mom. Ten years ago my mom was diagnosed with Alzheimer's. She barely knows me, but still seems to enjoy my visits. I am crippled by the pain of losing her as a person. It's such a horrible disease....and there is no hope. NONE. She will not get better. I love my mom more than anything. The one thing that helps me deal with that loss is to be in the moment and enjoy the little things in life that I know she loves.
You and your mom have hope. That's HUGE!
As for my cancer, after a few years I got to the point where I almost didn't even think about it. Things are going well and Aromasin seems to be working for me. My doctors are very happy. But one year after my reconstruction, cancer came to call again .... this time for my husband. He was diagnosed with stage 4 throat cancer. Surprisingly, I handled it pretty well, or so it seemed. I stayed off Google. I trusted his docs when they told me it was curable and I did what they told me. I never second guessed anyone's decision or what we were doing. But because I worked so hard at being a caregiver and worrying about my husband, I didn't take care of myself, so I am experiencing some backlash. Now I have to climb out of the pit again. Warning: Don't get too far into the pit - it gets darker and a lot harder to climb out the further you fall.
Right now I'm sure it feels like nothing is within your control, but you should realize there is a lot you can - and should - control. Both for yourself - and for your mom. If you want to research and obsess about something - research how to stay healthy. Studies have shown that cancer survivors can prevent recurrences and stay cancer free by exercising regularly. Other things that help prevent recurrences include taking 81 mg. aspirin daily, eating lots of fruits and veggies, learning ways to manage stress, getting enough sleep, etc. These things should be at the top of anyone's list, right? Let the doctors worry about her treatment and follow up. Help her with the other things she can do. Laugh. Live. Love. Spend quality time together. Enjoy little moments of joy. Seriously, it's what we all should do. Constant worry, stress, obsessing, anxiety, depression - those are the things that'll get you.
You must find a way to deal with the stress. Getting help from a psychologist is a good place to start. There are many ways to cope, including medication (especially now), mindfulness meditation, exercise, friends, support groups, Yoga, painting, journaling, blogging, whatever it takes. Find some creative ways to deal with this. Believe me, it'll help. You need to take care of yourself in order to help your mom.
Best of luck to you both!
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Jessica I too am triple positive diagnosed at age 49 perimenopausal. Went into chemopause. I should have started with Tamoxifen but given my family history with menopause she felt my cycles weren't coming back. Not standard care but she stated me with Anastrozole (Arimidex) which works similar to Aromosin. She tested my estriol (sp?) levels for 5 months. That's probably what your moms oncologist is testing. I stayed in chemopause but switched to Exemestane (generic Aromisin) almost 2 years ago due to side effects of the other. This April will be 5 years on theses drugs. My oncologist wants me to do 5 more. I was stage IIB with a huge tumor. Still NED and plan to stay that way.
Your mom sounds like she is doing the right thing to keep the cancer awa
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When they say 5yr survival rate, is that 5yrs from diagnosis, from start of treatment, end of treatment or something else? Love, Jean
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Claireinaz, thank you. I'm so sorry to hear about your husband's cancer diagnosis. I hate this disease and what it does to loved ones and their families. I have looked up the signs of PTSD before! I am convinced I have it as well. I often find myself having flashbacks of the day my mom was diagnosed while I was in the room with her. I think back to the way her surgeon broke the news to her (he was fantastic as well). I remember his tone of voice, how he was sitting, what he was wearing, his optimism and how he told my mom she would beat this etc. Sometimes I even have dreams about that day, it was awful. I have flashbacks of when they brought her very first chemo infusion too, in those dark oragny coloured bags and I remember the way I felt when the medicine came. I know exactly what you mean about triggers. I also have triggers that involve the month she was diagnosed / started chemo (3 years ago to the day practically), hats and those caps drive me insane. Every time I see my mom wear a hat I get upset because it reminds me of chemo. As crazy as this sounds, believe it or not I bought this candle from Bath & Body works maybe 3 weeks prior to her diagnosis. I loved it! Smelled so nice. I burned it all the time, even until the day before she was diagnosed and now the smell of it makes me sick!!! If I smell it in stores or if I smell someone wearing the lotion of that scent it scares me. That sounds insane I know. It's crazy what our mind is capable of doing. Thank you for the links to PTSD. I think I'll speak to my family doctor about what I'm going through (he knows about my anxiety and everything) and I'll take it from there and maybe he can refer me somewhere. In terms of the estrogen crap, I hope her levels only spiked as of recently. That's what scares me, is how long they've been high. In my mind I'm imagining and angry tumour growing as we speak because of this f***** estrogen! I hope I'm wrong but that's exactly how I'm feeling. Yes I am sure they'll be testing her estrogen again. Perhaps after the ovary removal? My mom is also extremely proactive so I'm sure she will ask them to do that. The onc said once the ovaries are removed the levels almost always go down almost immediately (her words). She's not worried one bit so I'm just trying to hold on to that.
Susanna , I'm so sorry about your husband's cancer diagnosis. I hope he is doing well today and has beaten the odds. It's so scary to read that stuff online, the statistics and all that crap I avoid. Anytime I see the word "prognosis" I stop reading the second I see that word. I know a lot of those stats online are BS and that everyone's cancer is different, plus my mom's doctors are optimistic so I just try to listen to that. I know that sounds contradicting to the way I'm feeling but when it comes to reading statistics and prognosis I just avoid that all together. I have a pretty good idea of what they are and what they say and the more I read that the worse I will feel. I am sorry about your friend's reoccurrence. As a matter of fact, I lost someone whom I was extremely close to and who was my biggest support system during all of this from breast cancer reoccurrence as well. I confided in her about everything. I actually met her on this site and she was the best thing that ever happened to me
I miss her every day and my mom and her also spoke. I am very close to her daughters so we talk often which is nice. She passed away in September and she was diagnosed a year and a half before my mom. When her cancer came back I was a complete mess. She was my source of hope since her's was worse than my mom's (in terms of # of nodes involved, my mom has 7/13 + , that's what keeps me up at night). She was stage 3c. Anyways I truly believe she was and is my angel because with out her I have no idea what I would have done. Once she got her stage 4 diagnosis I was devastated and when she passed it was so hard. As sad as I was for her, it gave me so much more anxiety with my own mom too. Thank you for your positive words and for trying to put things in a more simple, logical perspective. I really appreciate your help. Lala1, wow! Your estrogen levels were high too. These ovaries just won't quit lol. So frustrating. I'm so happy you're doing great and that you got them removed! Good for you, peace of mind is everything. My mom still has not met with the gyno, the onc sent him an email while we were in the room and if she doesn't hear from them by tomorrow my mom will follow up. I'm curious to see what he (the gyno) says about the estrogen levels and having a previous BC diagnosis. Like I said before, the oncologist was not worried at all. She was actually very calm and cool about it. I'm trying to tell myself that she probably deals with this often so if there was a huge concern then we would have known because she would say. Only thing I'm concerned about (which the onc tried to explain to me and now I can't remember what the heck she said) is that Tamoxifen is used for premenopausal woman (which now my mom is considered to be premenopausal again as of her recent blood work). My mom is taking Aromasin (which is for post menopausal women). Well now that all of my sudden my mom is no longer considered post menopausal, is the Aromasin she is on still working?? That's what scares me. But the onc gave her a new prescription for the Aromasin, so I'm assuming it is?? I don't know. I wish I remembered what she said.
Bc101, I'm very sorry to hear about your mom's Alzheimer's. That's an awful disease to have as well. A co-worker of mine is going through this with her mom too and I see the toll it takes on her, it's terrible for the person and even more so probably for their family. I'm sorry about your husband's diagnosis. It's like there's always something. That's why I get so upset when I hear people complaining about little, fixable things - or when they take things for granted, or when they treat their loved ones like shit! I'm sure everyone on this website can relate. Some people just have more trials and tribulations I guess, unfortunately. It's not fair. I'm sorry you've had to go through all of that. Thank you for your tips! My mom juices fruits and veggies daily and tries to be as active as she can. It's hard because she's had a lot of issues with reconstruction (that's a whole other topic) but she tries and she takes all her supplements. Mind you, she did all those things before cancer too. She was the healthiest person I knew. Cancer doesn't discriminate I guess.
lago, YES! That's what the oncologist has been testing at every follow up - the estradiol levels. I'm very curious to know, when your onc was testing your levels for those 5 months, were they on the low or high side? The plan for my mom is to stay on the meds for 10 years too, God willing. That must be so exciting that you're coming up on your 5 year mark! I hope you continue your NED for the next 50 years to come
I hope and pray every single day we get to that point in this "journey" (yea right,more like the roller coaster ride from hell) too. Thank you.0 -
Hi J92. I just want to say this: your mom is going to be FINE. Sometimes we need to hear it from others besides ourselves. I get so tired of hearing my own voice in my head, coach-cheerleader-reassurer--etc. I get to the point where I just can't believe myself because I'm the only one saying it to myself.
So let me say it for you: she will be fine. In spite of the terror of a dx like this, it is just another disease--it's being treated and will go away and stay away. c is a disease like heart disease, diabetes, arthritis, or something else. Untreated it can kill, but treatment will allow us to live a good long life and die of something else. Sometimes tx can even cure. So hang on, and I'm saying--she'll be fine, sweetie, okay?
Hugs
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Claireinaz, thank you so much
((hugs to you too)) you are so sweet, and you're right. Sometimes it helps hearing it from others. I feel the same way, sometimes I feel like I'm just pretending that she will be okay for how many times and I try and make myself believe that. The crap and thoughts that run around in my head related to this disease is really crazy. I hope one day there will be a day that passes where I don't think about breast cancer or even more scary and more consuming for me, a reoccurrence. Right now that doesn't seem possible I feel like I'm constantly waiting for the other shoe to drop, as negative as that sounds. It's so mentally, pysically, and emotionally tiring for me. This disease has made me an emotional mess. I know I sound so selfish right now because I am not the one who physically had the cancer and I will never know what going through that is like unless it ever happens to me. My mom is my best friend though and I have been with her through outthis entire process from day one, since the day of diagnosis, every single chemo and radiation; and to this day to almost all appointments that sometimes (and I hope I am not offending anyone here, I apologize if I am) it feels like I had the cancer too. It's like I am fighting it with her. I will continue to fight it with her and be there for her until forever. I literally can't imagine my life with out her in it. The thought literally stops me in my tracks and paralyzes me with fear and sadness. Some days are definitely better than others and believe it or not, some great things have come out of something so terrible happening. This experience has just made me more scared than I ever thought possible though. Sometimes my thoughts make me feel claustrophobic (if that makes sense)...only difference is unfortunately I can't run away or walk away from my fears and thoughts, especially ones that are so powerful related to cancer. It's like I am mentally claustrophobic. 0 -
Jessica sometimes I think it can be harder to be the closest relative. If you are the actual person dealing with cancer you put your head down and get on with it. You are always "doing" something, whether it is the treatment, follow up appts or the hormonal therapy afterwards. To a certain extent you can feel you are doing what you have to do and get on with it, and the rest of your life. I definitely found my DH's diagnosis much harder than my own. I never once cried about my self, but I lay in be many nights with tears streaming silently after his diagnosis. XXX
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Feelingfeline.... that is so true. During my husband's treatment it was like I was in a bubble. Our world - my world - revolved around his cancer, getting through the day worrying about all the little details of day to day caregiving. Nothing else or no one else beyond that purpose existed for me. It consumed my every waking moment. I had already gone through my own cancer and was done with everything, but I don't think being a survivor made it any easier. It was a hard road - much harder than what I had gone through. Now I am paying the price for ignoring my own health - mentally and physically. As a caregiver, you really have to be careful not to let it overtake you.
Jessica, I know what you mean about feeling claustrophobic. For me, the best way to get out of head is doing Yoga. Also mindfulness meditation helped me so much and I really need to get back to doing that. There's no doubt this is some scary shit, but there are many of us survivors out there. HUGS to you!
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And sometimes I think my caregiving experience with my own husband's cancer dx prepared me for my own devastating c dx. I knew what not to do, what TO do, and how to find my way through without all the screw ups we experienced with my husband's tx. It was training for what followed, and if I had to have it, then at least I drew upon it. Hugs to all.
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I will do my little update. I was DX at 31, just a few weeks prior to my 32nd Birthday. BRCA 1&2 negative, no fam history at all . Chemo did put me into chemopause, for reference.
My MO decided to treat me based on results of the SOFT trial. I had Trelstar and Aromasin. I made it 4 months on Aromasin, developed trigger finger at the tail end. That was when I decided to stop. The joint pain, the stiffness, etc, was too much. That was back in May.
I continue to be in chemopause, and I have chosen to not use antihormonals.
Tough decision, but it is one that I can live with. I have to go with quality of life, and it sucked while on those estrogen suckers.
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Best wishes VioletKali
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Thank you feelingfeline!
I met my new Oncologist today, and she is wonderful. She understands my concerns about quality of life, and wanting to feel better.
Just curious, is femara or the other AI's more "gentle" than Aromasin/exemestane?
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Violet - I've tried all the AIs and honestly, Aromasin was the easiest for me - Femara raised my BP and blood sugar so much I was off it within 6 months and Arimidex gave me bone pain and depression - that said, everyone is different.
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I agree....everyone's body chemistry is different and so will react differently. It seems like they start most women on Arimidex and then if they can't tolerate it, they're switched to Aromasin or Femara. I started on Arimidex and was so crippled up in pain I could barely walk. I've heard the same story from many women. My MO switched me to Aromasin and thank goodness it's working for me. Of course there are side effects from being estrogen deprived, but I'm able to tolerate it. I consider it insurance and to me it's reassuring to take that little white pill every day. But it's a very personal choice. There are many women who choose not to take an AI. You have to decide what is right for you. I'd say considering you had stage 1 DCIS, negative nodes and targeted therapy - chances are you're good to go.
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I have to agree with 208sandy and bc101. I started on tamox till I was truly menopausal and then switched to arimidex: awful stuff. I toughed it out for 1.5 years and then told my doc I was going to stop it. She put me on aromasin and for me it's working.
BUT: (big "but"):some women do well on Arimidex and awful on aromasin. If you were still nervous about stopping AIs completely, why not try arimidex for 3 months? You may do really great on it. And if you choose not to use AIs at all, I think there are other things you can do to balance your estrogen or reduce it. I'm not sure what they are--haven't looked into it in a while-- but probably it's a particular way to eat, and definitely no alcohol, which tends to support estrogen production, I believe. Others will add to my post or correct me, I hope, if I'm wrong!
I understand your choice to stop. I think there's a double-digit percentage of us who stop all AIs because we can't tolerate them for quality of life reasons, pain, lack of mobility, weight gain, etc.
Hugs
Claire
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