For Arimidex (Anastrozole) users, new, past, and ongoing
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Hello Everyone,
I have a question. I was initially on Tamoxifen for 6 months prior to a full hysterectomy. I was also had lightheadedness and an all out dizzy spell about every three weeks while on it. I started Arimidex and the lightheadedness continued for another 3 months . It slowly went away, but is back the past 4 weeks. Pretty much the same lightheadedness and dizzy spells. I did mention it at my 3 month, but oncologist didn't have any clues and referred me to a neurologist which I have not seen as yet. I did have a brain MRI about a year ago when this was happening and it was clear.
Has anyone else had dizziness go away and returned later on Arimidex
Thanks for any advice.
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I have had lightheadedness/ dizziness off and on and I think I have connected it to dehydration and/ or my ears being dried out and giving me a slight case of vertigo.0
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Humblepeace same--I find that I have to drink a LOT of water every day to feel okay (not lightheaded or dizzy, etc.) on Anastrozole. I don't get a sensation of thirst quite enough to feel okay, so I have to make myself drink more water, all day long, than I'm really thirsty for.
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Hi Ladies,
I am about to begin anastrozole and my MO, in my opinion, has always denied anything SE as related to the drugs she gave me, hence I am on my own.
I had been reading this thread (not yet finished but I will see my PCP, who is very caring, on Monday). I noticed someone mentioned doing some baseline testing, say Vitamin D level ...I already have my bone density scan, what other testing I should do prior to the Vitamin D level testing? I am planning to ask my PCP to do those tests for me..
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It’s D3, from a blood draw.
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I did a D3 test, cholesterol test, dexa bone density ( for baselines) and started checking my blood pressure at home. Arimidex could affect bones, cholesterol and blood pressure...so having baselines can help.
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First time posting here.
7 years ago had endo cancer. Surgery. Everything removed. No further treatment. This summer had Stage 1 Grade 8-9 breast cancer. No chemo. 20 sessions of Radiation. Now I am taking Amastozole.
All went relatively easy until radiation fatigue hit the last days of radiation. Started the amastozole 3 weeks after radiation (my decision) and it has been difficult with the fatigue, neuropathy, bone and muscle pain, hot flashes, and dry skin with dry spirit too.
Need to find a woman onco. Will do so after I recover from back to back colds and have energy enough to deal better. Grandkids are in a situation where they need me and finding the energy to fulfill basic tasks is difficult.
Interest in what brought joy is waning but the spark is still there somewhere. Husband and I doing well together. I felt like one week after taking amastrozole I became an old lady.
Next week: Work with insurance company and find a new Doctor. Responses appreciated,
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Peregrinela, Humblepeace and Hiking Lady
The information on dizziness and dehydration is most helpful. I have a hand held personal vaporizer when I am congested, but am going to look for a personal humidifier for daily use. It is good to be validated in concerns and resolutions. Thank you
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Maeven ...wow you have been thru the ringer! But it sure sounds like you've got your ducks in a row. Hope you can find a new Onco with little difficulty! I'll be starting Arimidex or some such thing very soon as I'm done with radiation now. I'll bet our dx's were very similar. Your SE's sound like others describe them. And speaking of being or getting 'old'.... I think of it as a very mysterious thing that happens almost over-night (if it's happened...) and demonstrates some strange and weird surprises. Trying to avoid these things is what keeps me on the treadmill.
Now I've never heard of Grade 8 or 9 so do educate me! Ha0 -
Maeven
Sounds like you are having to fight through alot! I've been on arimidex for about 18 months with no issues until the past couple of months, when I developed severe tendonitis in both wrists and some issues with fingers. I definitely encourage you to find an oncologist who will work with you. It makes a world of difference. I'm fortunate that my oncologist is actually taking arimidex for her own breast cancer, so she can totally relate to issues. There's an integrative medicine center at my local cancer center, and they are working with me on diet and supplements, which seem to be helping. I've always been very active, and perhaps that has helped as well.
Also mentioned the severe pain in my wrists to my orthopedic surgeon, and he also suggested that he can help manage the pain as needed. That could be another avenue for you. Again, I feel fortunate that he treats several women who are on arimidex and experience pain. He told me several of his patients have the same oncologist, and that the particular oncologist makes him irate because the oncologist dismisses these women and their symptoms with "just get over it". I could not have an oncologist like that and fortunately I do not. But this is all just to encourage you to keep looking and working with anyone who can help manage your symptoms.
best of luck to you
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Maeven - sorry you have to be here but glad you joined us on line. If you go to your personal information and make it public, we may be able to be even more helpful. May be that someone has a good MO near you or shares your diagnosis. I'm glad you are seeking a new MO. Mine has been great in fully explaining everything and listening to my concerns. It's not acceptable for him to dismiss your SE's. It's also OK to try a different AI. We do respond differently to them. I know I am on less of a roller coaster on letrozole than I was on anastrozole but some would say just the opposite.
Many of us experience PTSD and it's also OK to ask for help with that. A mild tranquilizer or a sleep aid may help you feel less overwhelmed. Holidays are hard, especially when cancer is added. I had my lumpectomy on Dec. 22nd and really appreciate that. I also know I don't do well with these short dark days. And even in Arizona we seem to be having them.
Try to find a little time for you - a take a nap, a bubble bath, a walk. I know staying hydrated and getting some exercise makes a difference for me. Some report less pain and fatigue with a lower carb diet although I personally haven't been very motived about that. I have also "mainly" learned to say no and not get overescheduled (also a problem with the holiday season).
This is a safe place to express your fears and frustrations. We've been there and understand. Stay close.
Taco
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MissouriCatLady - Leg cramps. Magnesium has really helped me, just don't take too much since it might cause loose stools and messy farts. It is one of the ingredients in the lovely jug that the pharmacist gives you for a colonoscopy. I first started getting leg cramps when I used to jog, before cancer. Upping the Mg to a 100% up the daily recommended really helped. I again looked to Magnesium when hormone therapy for cancer brought on cramps. I now I take 400 mg Magnesium Glycinate. It comes in many formulations. After trying Mg Citrate, Mg Malate, and Mg Glycinate, the Mg Glycinate seems to work the best for me. Regular exercise walks/hikes, treadmill, stretching, weight lifting also help a lot. I wish you well on finding relief. The cramps could come at any time and sometimes really hurt. I take several other supplements in addition to the Mg.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
Swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019. Stopped seeing lymphatic therapist early October. She did not think it would help until tumor removed/chemo'd/radiated into oblivion.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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Thisiknow
Thank you for your compassionate response. Thanks for getting that even though I have been through the ringer (liked that phrasing!) that I do have my ducks in a row (nice image). I have been gifted with a certain kind of resiliency that has been really tested by this last bout of cancer, treatment and then back to back bronchitis and colds. I attend wonderful groups for folks treated for Cancer. The groups include pottery, writing, and dance and I love it. I have not been able to attend for a month because cannot spread my germs, and so I suspect that is one reason that this is such a challenge. Laughingly, I lost my voice for a full week too, so that meant I was isolated even by phone calls. Thank goodness I am croaking enough to talk now.
My stage is one. My grade is 8-9. Stage means how developed the cancer is. Grade means how aggressive it is to come back and how quickly it spreads. There are 3 stages and 9 grades. Nine is the highest for aggressiveness. I googled Aggressive/cancer and this is what I got: The NCI Dictionary of Cancer Terms features 8,492 terms related to cancer and medicine. aggressive (uh-GREH-siv) In medicine, describes a tumor or disease that forms, grows, or spreads quickly.
So my solution, is I am going to aggressively pursue being with the people I love and enjoy, and dance through my seventies despite the wintery weather which can keep me indoors and events cancelled. I just have to get through this constant cold since radiation. And I am on it, working with the insurance companies next week to get a new onco-doctor. Thanks for the encouragement to do so. I needed it. Those ducks are quacking as they are lining up.
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MDRR
Thanks for the encouragement concerning the oncologist. Will report back when finding and getting in to see a new onco . I will work on insurance company approvals and arranging for traveling this week.
Sorry that you have developed severe tendonitis Grateful to read that you have found someone who listens and knows how to help. Feeling for and with you. I admire your seeking the correct assistance and finding it. You are a good example.
I live in a rural area but will work on finding something like the integrative services you are describing. We will travel. I was just saying to my husband that there must be a better way of trying to figure this out than by ourselves. You provided an example and informationg, that there is that better way. Thank you for your kindness coupled with your information. In this together. Grateful to have found you and yours here.
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Taco
Good idea about the lower carb diet. I have started up a daily food lower carb- intake and exercise- output log. In case I can find a nutritionist covered by our insurance, I will be ready.
Learning to say "No" and avoiding over scheduling is also a good reminder. I have taken a six months hiatus from volunteering with anything. One announcement and the news has spread and people have stopped asking/expecting, and I have stopped expecting of myself.
Our holidays have been scaled down with the expectations and work and increased with the home cozyness. 22 inches in one snowfall will do that.
Grandkids are our main priority and that has its rewards despite the recuperation time needed after the rejuvenation time with them.
PTSD is real and difficult. PTSD seems, sometimes, to be a step toward Post Traumatic Growth. I am meeting so many people who through their cancer treatment, in conjunction with others, are finding PTG too. May we feel some bits of PTG in our lives today, even as we experience these darker days.
The care shown here is for me an experience of women facing the hurt, while finding the healing of being with others who "Get it". Thank you for your good reminders.
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Maeven
Are you referring to the Nottingham scale, ranging from 1 to 9, as you are reporting your grade. That scale certainly refers to aggressiveness (mitotic rate) but is different from the typical use of the term grade. So, for example, if your Nottingham score is 8 or 9, then you would be Grade 3. I think that this was why the other poster had never heard of grade 8 or 9.
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Maeven Wow, big sympathy to you. It's hard to have all this at once. I love the idea of a female MO--my original one was, but she left the practice. I have had a REALLY empathetic and compassionate, good communicator since then, even though he's a man. One way I found him was to call up the RN's at that practice and describe what kind of doc I wanted (good communicator, empathetic, compassionate), and they came up with this doc, and he is exactly that.
If you would feel comfortable sharing your breast cancer information publicly with us, we can understand better where you are in your diagnosis and treatment journey. It's in My Profile, and you set your information to Public, and it will appear below your post. Helps everyone appreciate the different situations of each of our journeys.
As for fatigue, that sounds like what you should put your attention to. At the end of my radiation, it took several weeks to turn around the fatigue. A lot of extra water---drink and hydrate. That will also help with the Anastrozole. All that 'old lady' feeling (joint creakiness, fatigue) got better after a few months. For me, getting some kind of exercise every day has also helped a lot. I do it first thing each day, or I find excuses, and it doesn't happen. When I get up and move for an hour (swimming, walking, etc.), I'm much more comfortable the rest of the day.
You've been through TRAUMA, yes, it's being put through the wringer, for sure. So, treat it that way, and meet your own needs first. In the airplane, we're told to put our own oxygen mask on first. Take care of yourself, whatever that means, as far as hydration, exercise, rest, good nutrition, and deciding how much socializing and interaction and when. Whatever helps you feel stronger, inside and out.
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Scrafgal
Nottingham score: I do not know about the Nottingham score. I had the Oncotype DX test for the breast cancer. Although my sccore was 32 the local Doctors with our agreement decided against chemo and for radiation and hormone supression. Because of the high score, it may still not be off the table.
My pathology report results as presented to us by the surgeon and the oncology Dr. stated stage one since the tumor was 4cm but grade 8-9 for type of cancer aggressiveness. Seven years ago, I had endometrial cancer. Again it was stage one but then the grade was 6 for agressiveness.
I just googled Nottingham score and found this: https://www.oncolink.org/frequently-asked-questions/cancers/nottingham-score-for-breast-cancer
I am presuming from your question and the resultant reading that I received both the Nottingham score and the Onco DX test and score.
On Vitamin D: I am glad you wrote. I was helped by you mentioning your testing and then routine with taking vitamin D , and calcium. My Doctor did not suggest a base line test or taking these items until I mentioned them. I then found out that I was taking the vitamin D at the wrong time of the day to be effective. I cannot recommend this "Dr". However, checking the information it seems the video is accurate in how to most effectively take D vitamin.
https://www.youtube.com/watch?v=6TilqdPb-FI
Still baffling: I must admit even with this being my second round of cancer, it is still baffling to me and so I am on the search for an onco who can help my husband and I to comprehend better and follow the best path more effectively. Thanks for being a part of the positive process and hopefully progress.
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fac 3
Good luck with your primary on Monday. I am glad to hear that she is receptive to suggestions and responsive to your needs. Also, will be thinking of you as you start the Anastrozole. It has been a bumpy ride for me, that I think is easing a bit as I comprehend more, have support, and come to terms.. In this together.
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Hiking Lady
I always appreciate the oxygen mask analogy. Good reminder. Thank you. I also appreciate the reference to having been through trauma. Although cancer has not been the greatest heartache or trauma in my life, it has been one of them. It doe not compare to the death of a child. I have been fortunate to have moved from Post Traumatic Stress Disorder to Post Traumatic Growth with an order to my life. I know that what I am going through now, is less about personal resiliency and more about affirming the deep lessons I have learned in the Post Traumatic Growth process. This too will pass and I will move deeper into the grief and poignant pain into the peace that is often beyond my understanding.
And you were right on target. The fatigue is the number one challenge. Fatigue can develop into intertia so keeping the body moving is essential. I return to my Bone Builders group as soon as this cold resides.. Helps. Thank you for your compassion and suggestions.
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Maeven, my ER/PR+ HER2- tumor was 4.4cm and Grade 3 (same 8-9 nottingham score as yours). My ki67 ws 90%. My oncotype was 46. My stage was 2, under the old system, but likely would be stage 1 under the new system--not that it matters, since I've already been treate. Despite the size of my tumor, I was node negative (confirmed after surgical patholoy). I was diagnosed at exactly 50 and opted for a mastectomy with chemo (no radiaton needed since I was confirmed node negative). Have they told you whether they believe that you are node negative?
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Scrafgal
Fortunately no cancer found in the lymph nodes. In that way, I got off easier. Had a good day today. Did a small amount of shopping for the grandkids Christmas and got a small real table top Christmas tree. Had fun. Bit of felt progress.
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Thisiknow, highgrqde typically speaks to the aggressiveness speed at which the cells grow. I found this definition...
All DCIS is considered "stage 0 breast cancer" – or the earliest stage possible. Once DCIS as an early stage cancer is confirmed, it may be given a specific DCIS 'grade' based upon the particular kinds of cells which are growing, the characteristics of their nuclei and their growth patterns. The lower the grade, the more slowly the cancer cells grow and the more closely they resemble normal breast cells. Based on this information, the pathologist will describe the DCIS as either grade one (low), grade two (medium) or grade three (high)0 -
MACTAZ ... as you said,"....the pathologist will describe the DCIS as either grade one (low), grade two (medium) or grade three (high)"
It's the language that confuses me. They called my IDC "Grade 1" but my DCIS "Highgrade." So does that mean that my pre-cancer is very aggressive? Thanks for your response.
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Maven, I was curious i have only heard of grade 1-3. I've never heard of 1-9. Are you in the the US? Am I misunderstanding something? I've also only heard of stage 0-4, not 1-3. Thanks for the info.
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Krose53 ...here's the link again for the Nottingham scoring given above which will explain things about the 1-9 score.
https://www.oncolink.org/frequently-asked-questions/cancers/nottingham-score-for-breast-cancer
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Krose,
In addition, here is the American Cancer Society explanation of grades:
Challenging to comprehend and/ or explain.
May we feel strong and self compassionate whatever our stage and /or grade . May we feel together tonight/today in gratitude for each other.. Thank you.
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Peregrinelady and HikingLady, Thanks for responding. I do need to drink more water. I'm not dehydrated but only drink two bottled waters a day and nurse a 12oz coffee all evening at work. Just typing that makes me realize I need more hydration. I also do not have the urge to drink.
I have had so many se's Tamoxifen first for six months and now Arimidex for18 months. Dizziness, lightheadedness, neuropathy, and joint pain just to name a few. Some side effects subsided after several months but have returned. I'm so done with testing for all these side effects. I'm grateful nothing is found, but wish I didn't have a reason for checking. Thanks ladies for letting me vent.
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