Uplifting and Lively Messages. No holds barred..
I believe that positive self talk is very important, in many facets of life. It is especially important, when you have a five year window of taking anti-hormonal medications. I am young, compared to others on this board - early 50's, and will be taking hormonal therapy for as long as possible. In this thread, everything is on the table and everyone is welcome.
There is no judgment or accusations that are appropriate with a bc diagnosis. We did not ask for this, we did not invite this, it just happened. So, if you would join me on a path to health and happiness, I would appreciate the company. You can see my diagnosis below. My current issue is insomnia, which I am hoping to soon cure!!
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Yes I'm long out of it (5 years on arimidex finished 2 years ago) but do remember insomnia. Nothing like losting all your estrogen in a flash! But IMHO nothing is better for you than sleep. I just take 2 clonazapams and occasionally a tylenol 1 with a bit of codeine. Whatever gets you through the night!
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Thank you, Flannelette!! How were your years on arimidex? I don't begin until January. I have until after the holidays to recover from surgery and radiation. I will then get an ovarian suppression shot. I want to do everything possible to be successful on the therapy. I finally slept through the night last night, but it was not an easy sleep. I have a light to use for seasonal depression that I have started using to re-establish my days and nights. Somehow, the radiation gave me insomnia and flipped my circadian rhythm. Here is a little excerpt from the NIH on the connection between melatonin, circadian rhythm and breast cancer.....my thoughts are that these divergent bodily functions are all related....can breast cancer treatment alter the circadian rhythm.....not sure...
Epidemiology. 2005 Mar;16(2):254-8.
Circadian disruption and breast cancer: from melatonin to clock genes.
Author information
- 1Department of Community Medicine, University of Connecticut Health Center, Farmington, Connecticut 06030-6325, USA. bugs@neuron.uchc.edu
Abstract
The global impact of breast cancer is large and growing. It seems clear that something about modern life is the culprit, yet there is thus far a lack of satisfactory explanations for most of the increases in risk as societies industrialize. Support has developed for a possible role of "circadian disruption," particularly from an altered-lighted environment (such as light at night). Lighting during the night of sufficient intensity can disrupt circadian rhythms, including reduction of circulating melatonin levels and resetting of the circadian pacemaker of the suprachiasmatic nuclei. Reduced melatonin may increase breast cancer risk through several mechanisms, including increased estrogen production and altered estrogen receptor function. The genes that drive the circadian rhythm are emerging as central players in gene regulation throughout the organism, particularly for cell-cycle regulatory genes and the genes of apoptosis. Aspects of modern life that can disrupt circadian rhythms during the key developmental periods (eg, in utero and during adolescence) may be particularly harmful. Epidemiologic studies should consider gene and environment interactions such as circadian gene variants and shift work requirements on the job.
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I currently get monthly zoladex injections and take aromasin. I struggle with insomnia almost nightly. Sometimes a benadryl works. I am thinking about trying melatonin.
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I am considering doing yoga, meditation, switching around my meds (which I did last night for a long peaceful night's sleep.) Melatonin interacts with one of my meds, so I think I am going to try to stay away from it. Also, I believe in acupuncture and will add that to my laundry list of healing therapies. I am using light therapy right now to synchronize my days and nights. With such limited sun exposure this time of year, it probably does not help to re-establish a circadian rhythm. Logang, I see that your doctor gave you the shot and left you alone for a month plus, before starting Aromasin. How was your insomnia on just the zoladex?
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My MO had me get 3 zoladex injections before starting the aromasin. I didn't have insomnia with just zoladex. I just had occasional hot flashes wake me.
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Hopefully, my shots will go as smoothly as yours. I have heard that the first several months are the hardest on the AI's, and that if you can get through that, you can get through five years. I offered my ovaries up as a peace sign, and was turned down because they were in too good of condition to just get rid of. So, shots it is. Most of the women that I have talked with on here are post menopausal and have different issues.
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I do have side effects, but nothing that keeps me from living my life. Of course I have hot flashes, but they aren't bad for me to deal with. I take my pill at supper so most hot flashes are in the evening and at night. I probably have less than 10 a day. I do take magnesium and walk every day and it must help.
We already discussed the insomnia and there are things that I can try.
My hips get stiff and sore after sitting, but it gets better after I get up and walk for a few seconds. Nothing I need pain meds for. My walking everyday helps with this too.
The dreaded vaginal dryness and no sex drive isn't much fun, but it is what it is. I use coconut oil at least once a day, most of the time 2 x daily. A little nervous to try having sex again since it has been a while. Just getting back up to par from last surgery. Last time we had intercourse it was painful, but that was before I started using coconut oil. Thank goodness my husband understands!
I also had to start taking calcium d/t the risk of bone loss with the AI.
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Logang, you are so brave and so young! We both understand what is a stake and have supportive husbands. Did your doctor take out 31 nodes or sample 31 nodes? My doctor took 4 which were all clear. I had debated the lumpectomy vs. mastectomy pros and cons, for me, it was lumpectomy and radiation. But, if I were younger, I would have probably went with a mastectomy. A friend of mine, 30 at the time, 16 years ago, had a mastectomy after finding cancer. She went through chemo and did great. She still is doing great today.
Having understanding family and friends, makes this situation a much kinder reality. As I look back and reflect on this year, it has been pretty unsettling. My kids are an 18 year old daughter and a 20 year old son. I had my surgery a couple days before my son went off to the university in Switzerland. I wanted him to see that I was okay, and not to worry. He has had a blast in Europe and does not want to come home.
We discussed the situation and I told him to take a couple of weeks next summer and reunite with his large dorm of friends for a band tour across Europe.Have you looked at the results of the SOFT study? It showed that AI's plus ovarian suppression have better prognosis vs. tamoxifen alone! So, I guess we are on the right track. Getting back into personal relations after such a traumatic experience is pretty scary. I finished radiation in November and have kept to myself interpersonally. Not ready yet to tackle that aspect of my life. I was hoping to go into menopause during radiation, and my MO thought there would be a chance. No such luck, I have the ovaries of a 40 year old with fsh and lh to support a pregnancy. Ugh... not the news I wanted to hear. Not even near natural menopause. That would be great news to some women, but from my perspective I just wanted to at least start perimenopause naturally.
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I am doing the ovarian suppression plus aromasin because of the study. My MO suggested it because it is showing to be more effective. I am game for just about anything that will keep my chances lower since I earned the label high risk for recurrence. My mom died at 34 when her breast cancer came back. Her original diagnosis was around age 30. 3 other aunts have had it, as well as there mom. One of my aunts is now battling metastatic breast cancer after hers came back this year. She was diagnosed with ER+ a few years ago and took an estrogen blocker. It really scares me!
My surgeon did the ALND on my cancer side. His words after surgery: "I took a lot of nodes because they didn't look or feel right and I didn't feel right leaving them in." I had a breast MRI that showed them to be abnormal before surgery too. I had the dye injected before surgery for the SNB. At least all 31 were clear! I still think my surgeon thought my nodes were going to be positive.
I was in chemopause when I started the zoladex injections, so I had one really light cycle and none since. The only good side effect, no periods!
Our oldest is 19 and still lives at home. He works full time and isn't planning on going to college. It has to be hard to not see your son! We do have a great group of friends and my coworkers have been great. Family kind of so so.
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Logang, It is hard not to see my son, but I rather preferred it to him having to watch me go through radiation and surgery recovery. My daughter attends a good college in our hometown and lives at home. She will also go abroad eventually, but she is not ready yet.
That is too bad about your doctor taking so many lymph nodes, and finding them all fine!! I had an agreement with my doctor to take only the sentinel nodes, which were 4 and tiny. They were fine too. I really liked my breast surgeon, RO, and MO. We do not have breast cancer in the family, I am the first. I think that mammograms really detect things happening early and therefore we get more treatments than our older relatives. My mom is 88 and is in rehab for her knees and congestive heart issues. My dad was 46 when they had me and she was a lot younger. Being the first in a family means that you are a trailblazer, because there is no history or information.
How are you coping with the holidays? I don't have a tree up yet, but do have some presents purchased.
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I wish mammogram would have found mine. I started early screening mammograms several years ago. Had my last one in May of last year. Found a lump in December. I wish I knew if my mom's cancer was the same type. Back then it was just breast cancer...
The holidays are going the same as usual. Got the tree up a little later than usual, but most of our shopping is done. We will have my family over this Saturday.
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I always tell my friends that are younger, get a baseline by 35, and regular yearly mammograms starting at 40. Insurance companies are pushing for women to wait until they are 50 and then go every other year. I have gotten one every year since 40, and am a stickler for getting a good mammo with a good radiologist. Some radiologists may wait and see, but mine was from Harvard and knew from the ultrasound (day after mammo) that I had early stage bc. Biopsy was the following day with surgery 27 days later. I still can't believe it happened to me, but have dealt daily with my emotions and sense of self. I stay upbeat and positive because I believe attitude is half of the battle. I prepared myself for various scenarios during radiation and literally flew through it, while another women radiation patient prepared for nothing and had all of the side effects - burns etc. My motto has been ..... be prepared, be ready and get the surgery/radiation/hormone therapy done. I also believe once you have faced a bc diagnosis and dealt with surgery and treatment, that you emerge a much more thankful and strong woman.
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My husband and I always find the humor in things. Between my sense of humor and positive attitude, I made it through this year. Two surgeries, a mediport in and out, working through chemo, and now tissue expanders! I go back to work on Thursday. I am a home health RN. I said back in the beginning that I didn't know if being a nurse was a blessing or a curse going through this. I have taken care of and educated patients after mastectomies and chemo, so I have seen a lot of the good and bad. Obviously my medical knowledge helped me a lot and I became an expert on breast cancer really quick!
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Logang, what great work experience you have!!! My sisters have nursing backgrounds, and I studied pharmacy. I ended up with an MBA and was an executive for several years. Working through chemo is a huge deal. I piddled around the house during radiation! I kept waiting for fatigue, and all I got was insomnia. I am personally glad to see a new year come soon and put this one in my rear view mirror. Having experienced bc first hand, you have become an expert and an advocate for your patients. I am looking forward to not thinking about this every day. Once I am into my hormone therapy, hopefully I can move on to the next chapter.
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Wow, what a difference light therapy makes on insomnia. I have been getting better rest and waking up at an earlier time. I am hoping to have this post radiation insomnia solved by the time I get a Lupron shot. I am thankful for having all of the methods of ridding my body of bc and am thankful to the women pioneers that came before us to pave the road to recovery!!!
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Hi Michelle! Good news on the light therapy - care to share details? I bought a small box this week, only 5000 lux, but hope it will help with energy level, etc. How interesting that you studied pharmacy. I'm a retired RPh. I didn't see our son for nine months after I completed treatment due to his internship abroad and might have made a trip to visit however was also dealing with the onset of lymphedema at that time.
For Logang, great job on the nursing career and being able to go back to work. I assume you took advantage of genetic counseling when having your tests. Some companies, including Myriad, did not use a fully comprehensive panel, choosing not to search for certain rare mutations, so it is important to select the best lab for analyzing any particular sample. With the family history you describe, it sure sounds like there could be an inherited tendency to develop cancer. I would be concerned about your daughter and her cousins...
Actually, I'm convinced that all women diagnosed prior to menopause need to consider whether a defect may have 'hidden' among the male ancestors and ask for a referral. Also, it's important to check back periodically to see if new information emerges or further investigation is possible.
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vlnrph,
I have been using light therapy for at least 17 years in the winter with a tried and true light box. Northern Light Technologies in Canada pioneered the use of light therapy for seasonal affective disorder. The use of light therapy has since found its niche with shift workers, clinically depressed patients, and women with menstrual irregularities. I use the desk lamp/Sadelite, which emits 10,000 lux. When I use it, I feel like I am in Florida with a bright white sun overhead.
After I received radiation, my circadian rhythm became flip-flopped. Finally, I could not take it anymore and decided to aggressively use my light as soon as I woke up, and changed my use of an older antidepressant to help with sleep.
I noticed that you began your hormonal therapy with tamoxifen and then switched to an AI. How did that work for you and are you finished?
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vlnrph: My genetic testing was done through Invitae. I had 32 genes tested. I don't have any daughters, just 2 teenage sons. Some mutations could have increased there chances of other cancers, so I am glad they were negative. It would be nice to know the link though! My mom was one of 11 ( 9 girls, 2 boys), so I have a lot of cousins. Most of the girls get early screenings. One is BRCA1+ and I got her into my breast center when she needed a biopsy earlier this year. They put her through more testing and it was determined she didn't need a biopsy.
Michelle: I am glad you got some good sleep. I had an expander fill yesterday afternoon, so I took a flexeril before bed last night. I slept well, thank goodness! I went back to work today and it went well. Came home and walked a mile on the dreadmill, made some supper, and finished some laundry. I'm tired so hopefully I sleep well tonight!
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My oncotype was through Genomic Labs. It came back fine and so no further testing. I am comfortable getting started with treatment medications, which begins in January. The difference between my surgery plus rads recurrence was 14 percent, 9 percent if I took tamoxifen for 5 years. That is a fiv percent difference in risk, that I would like to bring down altogether.
My mom is 87 and is in a rehab center for her severe arthritis in her knees and congestive heart failure edema. She finds it painful to walk and does not do much movement without the Hoyer lift. She is tired and my sisters want to continue to push her in rehab. I am feeling pretty sad for her these days. She has been completely lucid, but mentioned some dreams she was having and said it was hard to tell if they were real or not. She told me that my dad (who would be 100 next year) is in a most wonderful place that we could not ever imagine. I told her that he was watching her and making sure she was okay. I also told her that there would come a time when she would join him and that would be okay too. She is one of four remaining siblings still living, the other six have passed on. No other sibling has lived as long as she has. I want to keep the situation positive and not sad. If someone gets to live to be almost 90, they have lived a long time and it is okay to let them move on.
I am an optimist, always have been, always will be. When I was a 6th grader I was a member of the Optimist Club's speech writing and contestant pool. I always look for the silver lining, and want so much to set the tone for my family. I am the youngest and the leader of the pack. I have two older twin sisters. I am glad my son is coming home from Switzerland in less than one week. He has been gone for the duration of my bc treatment and my mother's hospitalizations and rehab.
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Wondering how to break up scar tissue that I incurred after radiation. I don't like feeling the lumps and bumps and wondered if there was a safe way to break up hard spots?
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flannelette2....Hi there. I agree that sleep is very important. However as a medical professional I must say that both drugs you are taking are addictive. IMO there are much better and safer options out there. Obviously it's your body and you can do whatever you want. I just want people that read your post to understand the risk. Good luck to all navigating this disease.
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Not sure if flannelette will see dtad's message: she may not get back to check this thread but I agree it is important to be aware of medication risks. Hopefully her prescriber/pharmacist advise her when she gets refills.
Oops logang, I must have been thinking about Michelle's mention of a daughter when I wrote that. I'm always glad to hear people are in the loop on genetic counseling and appropriate screening. There's so much new information coming out all the time. Your family reunions must be pretty interesting with all those relatives!
Physical therapists can do miracles when it comes to scar tissue. Might be good to ask for an evaluation. Had to smile when I read about the sixth grade optimist. Watching an elderly parent decline is not fun. I was employed in long term care facilities for years - really admired the folks who worked there among very difficult situations.
I was OK for several months on letrozole until trigger finger affected my violin playing. Also tried exemestane however could not tolerate that either. Not on anything now except prioritizing exercise, diet & healthy habits.
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VLNRPH, yes, a sixth grade member of the optimist club! I was raised in a Catholic grade school and we were expected to be leaders. I found that in order to lead, you must have a positive attitude. Who wants a leader with a negative attitude? In my world, there is no room for jealousy, just for encouragement and support. My sleep has definitely improved because I take an older tricyclic in a very pragmatic way to ensure that I can go to sleep.
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What did anyone else do this weekend? We had an ice storm in Illinois and I had to crawl up my porch steps because they were slick. I made it to my door and realized that my niece had my key. I thought, "oh, no, how I am going to get back down to my car?" I called my husband to ask if I could throw dirt from the potted plants on the ice, he said it would be slick. I sat on my butt and proceeded to scoot down the steps. As I arrived at the bottom of the steps, I could not get up. Somehow, I managed to open my car door and throw the belt from my coat over the steering wheel. I was able to hoist myself up and into my car. I am so thankful that I had that belt or I would have been crawling the length of the drive to get into the grass. I did not want to break any bones because I start my shots and meds in January and I don't want a hold up. No one wanted to put up the big tree this year. We got down my tiny 3 foot tree and it looks pathetic. With my mom in the rehab center, my son not coming home until this week, going through bc and treatments, the mood is a bit somber this year. I might have to bite the bullet and get the big tree down. This puny thing makes the Charlie Brown Christmas tree look plush....
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Hi Michelle,
I grew up in Northern Vermont, so I know all about winter. I also love to ski. I think that exercise outdoors is the key but do hear you on the ice. Anyway, I am off skiing in the AM, and have an impromptu vineyard skiing weekend on tap for Christmas.
I have a huge REAL tree this year. For about 7 years, I couldn't fit one in my small Seattle apartment. Then I moved. This year's is really special.
Anyway, tomorrow is almost here. Need to turn off the steaming Christmas puddings and haul my body into bed. But do try to get outside. Makes a world of difference in how you feel. I expect to sleep like a log tomorrow night. Even tonight as managed to fit in a chilly 5k run. - Claire
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Claire, looks like rain on the way. I don't like the cold rain but the static electricity should be better.
Have fun skiing I kind of miss the New England snow.
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I think that the snow should hold in Yakima for my skiing adventure and today should be just fine. I may have some fun winter driving to contend with both excursions, but that goes with the territory. My Subaru is up to it. Many of my favorite trails are open at Snoqualmie, so that should be fun.
Not sure if "uplifting" but there is nothing like skiing in the rain to make you appreciate a hot bath later
- Claire 0 -
I do love the outdoors. We own quite a few acres of land with two rivers intersecting on it. Plan to get out with the ATV and do some winter touring. The ice was sudden and unexpected, so I was not prepared. No one was. My brother in law was having a dishwasher delivered to his house that evening. While getting in my car to leave, I glanced back at the delivery person wiping out on the ice. We had over 100 accidents that day, and the police had people write their own reports. I love the brightness of snow, just not the slickness of ice. I bought some cleats yesterday for getting around on ice. Have fun today girls, you deserve it!!!
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We have the same ice here in Ohio. I had my family out for Christmas last night, luckily they all live fairly close and use mostly main roads. We salted are walkway and steps, but couldn't do anything with the driveway. At least no one fell. I spent the day cleaning and we always have a big pot of chili.
Really missing my niece and sister-in-law. We lost them in a house fire earlier this year. My niece would have turned 4 in January. My sister-in-law always liked to make home made gifts over the years. I have a lot of ornaments on our tree from her and they will continue to hold fond memories.
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Logang, I am sorry to hear about your personal loss. That is so tragic. I can't imagine any of my family (except the elderly) passing away from unnatural causes. My sister is getting a new furnace installed, and they have something rigged up to at least warm their house in the meantime. I can't wait until the new one is installed. It is sitting in her basement ready to go.
The severity of the ice was quite disconcerting. We had an ice storm several years ago and lost all of our heat, power, everything. It took days for ours to be hooked up. My kids and I shivered underneath big blankets trying to stay warm. Our fireplace needed a chimney inspection before we could use it. Trees were down everywhere, and the ice was several inches thick.
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