Arimidex - Coping with the SE's
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LOL....OK now I am more confused than ever.
Why is it called Al when they are aromatase Inhibitors...why not AI or Ai? Am I missing something? I usually am. AI AI II, Grade 3, 1/4 nodes, ER+/PR-, HER2-Surgery 08/18/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left)Chemotherapy 10/20/2011 Adriamycin, Cytoxan, TaxolHormonal Therapy 03/01/2012 ArimidexRadiation Therapy 03/05/2012 External0 -
LOL now I am more confused than ever!
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Al...AI....Ai
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Vicky-Love your short hair, it shows off your beautiful eyes.
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WHICH risk musical ? The risk of worse lungs , worse bones or possible recurrence ?
Dobie mentioned a small little spark ( stage 1 ?) which is why I mentioned the bucket.
Again, the analogies are not perfect. Really can't compare apples to oranges !
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Purple, Ruth and Spunky - thank you! (Spunky I used to say God gave me these big blue eyes so you don't notice my Italian nose - ha ha - now I say he gave me these eyes so you don't notice my bad hair! LOL)
Musical - 13" at 1 yr 8 months! That is awesome growth. Average is 1/2" month so you are totally above that! Lucky! My hair has always been curly and it actually came back less curly! Go figure!!!
kjiberty - don't hate, but I've never colored my hair - not before nor after chemo. My 75 year old mother has very little gray hair, so I've been blessed. I don't have any gray. I've heard you have to be careful with new hair - sounds like Ruth had someone who knew how to treat it!
Good luck all - I used to say every day was one day closer to being done (with treatment); now I say every day is one day closer to longer hair!
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MamaV: Good for you! Your hair looks beautiful and you are beautiful too! I will have to follow you closely on this thread as I started arimidex the day before you to see if you have any S/E's. So far, so good, but again, it's just a short time I have been on it.
Ruth: I agree with you!
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I guess my analogy was confusing. I was thinking about the spark as a 1% estrogen positive Ca and a bonfire 100%. estrogen poiitive . Estrogen is the fuel for both and the surest way to reduce risk of reocurrance is to eliminate the fuel ( change the environment, rain, get it) . Oh well, never mind. LOL.
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schatzi14... . Ha ha FWIW Im anything but outta the woods yet LOL
Dobie thank you for your analogy. I appreciated it, but LOL Im still thinking. Your further explanation was generally what I thought though, as I said.
Purple I didnt take the spark to mean Stage1 which is not equated with how estrogen positive a tumor is but is dependant on other factors like tumor size, lymph node involvement etc. The spark I took to mean as dobie intimated 1% estrogen pos. The bonfire 100% pos -
In response to your post, I should have answered it appropriately, instead of getting off the track somewhat.
I thought your bucket and hoses meant minimal treatment to treatment with both guns blazing, respectively. In the way dobie was explaining, it wasnt a matter of minimal /maximum treatment according to staging, because ER+ is synonymous with either Tamoxifen or typically the 3 AI's and as I said % isnt typically equated with staging.As far as risk goes, I meant that that is a variable in itself. Some people will come out all guns blazing after theyve thought about their circumstances and others not. Some of us will go much further than others with a very similar diagnosis, for many reasons, but at the end of the day theyre our own decisions, which is all good as long as theyre hopefully informed ones..
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8 minutes ago, edited 4 minutes ago by AMP47Chemotherapy Could Backfire, Boost Cancer Growth
inShareShare4 First Posted: Aug 06, 2012 01:00 PM EDT
(Photo : )
Cheryl, at the Georgia Health Sciences Cancer Clinic in Augusta, sets up Roel's third dose of Azacitidine the chemotherapy designed to maintain his remission. New research has revealed that chemotherapy can cause damage to healthy cells which triggers them to secrete a protein that sustains tumor growth and resistance to further treatment.In a "completely unexpected" finding, new research has revealed that chemotherapy can cause damage to healthy cells which triggers them to secrete a protein that sustains tumor growth and resistance to further treatment.Like Us on Facebook Chemotherapy is a drug treatment that uses powerful chemicals to kill fast-growing cells found in tumors in the body.Around 90% of patients with solid cancers, such as breast, prostate, lung and colon that spread - metastatic disease - develop resistance to chemotherapy.Researchers tested the effects of a type of chemotherapy on tissue collected from men with prostate cancer, and found "evidence of DNA damage" in healthy cells after treatment.The results of the study are published in the journal Nature Medicine.Researchers at the Fred Hutchinson Cancer Research Center in Seattle examined fibroblast cells. Fibroblast cells normally play a critical role in wound healing and the production of collagen, the main component of connective tissue such as tendons.Researchers found that chemotherapy causes DNA damage that causes the fibroblasts to produce up to 30 times more of a protein called WNT16B than they should and the protein fuels cancer cells to grow and invade surrounding tissue - and to resist chemotherapy.Lead researcher Peter Nelson said the findings indicate that the tumor microenvironment also can influence the success or failure of these more precise therapies."Cancer therapies are increasingly evolving to be very specific, targeting key molecular engines that drive the cancer rather than more generic vulnerabilities, such as damaging DNA," Nelson said.A cancer research expert from the UK Fran Balkwill, told BBC News that this work fits with other research showing that cancer treatments don't just affect cancer cells, but can also target cells in and around tumors."Sometimes this can be good - for instance, chemotherapy can stimulate surrounding healthy immune cells to attack tumors," Balkwill said. "But this work confirms that healthy cells surrounding the tumour can also help the tumour to become resistant to treatment. The next step is to find ways to target these resistance mechanisms to help make chemotherapy more effective." © 2012 Counsel & Heal All rights reserved. Do not reproduce without permission.0 -
which is all good as long as theyre hopefully informed ones..
Musical
Whatever happens to me with this cancer, will not be because I am ill informed -trust me ! Thanks for your post- I got it.
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I have always opted for 'standard of care' treatments' because I have wanted to do everything possible to never have to hear the words 'You have cancer' again. The recommendations are not just drawn out of a hat. Many, many, many of our brave sisters have participated in clinical trials to get us the most successful treatment possible at the time (which of course changes as more trials are completed, new drugs come into play etc.).
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I wanted to do everything possible to iradicate my cancer. I agree with Ruthbru. I never want to hear the words, "You have cancer," again. I suffer a lot of side effects from Arimidex, but better those side effects than the side effects of metastatic disease. I'll stick with the A-team, but will also acknowledge everyone's right to make their own decision, informed or otherwise.
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I feel pretty strongly about doing everything possible. I just buried a friend a couple weeks ago, and have another about to start Hospice. They both were at an earlier stage at the time of their diagnosis. Neither had a kind of cancer for which there were long term treatment options, such as we have. Of course people can do what they want, but it would have to be a pretty bad SE to be worse than what they and their families are going through.
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I couldn't agree more Ruth. I too have a friend dealing with a stage IV dx, and the family is suffering greatly too. I'm so sorry for your loss.
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Purple ... If you feel youre as informed as you can be thats great! but I'll qualify and say as informed as much as one can be at the time. I was so overwhelmed by my DX that I could barely think straight for I dont know how long. I did the best I could at the time. Some people just don't have the initial support thats needed, and how often do we hear "if only I had known!" You're right about the apples and oranges, especially if youre looking at fine details.
Ruth ...exactly, my thoughts too but some people are just plain out willing to take more risk because of QOL issues. At the end of the day everyones "enough is enough" is their prerogative.
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Kjiberty - I think I'm a year ahead of you - I started arimidex one year ago
I am leading the path for you!0 -
MamaV, thanks for the pictures you are a beautiful lady with or without hair. I went to my daughter Saturday(she is a Hairdresser) and she trimmed up my neckline, I am going back on Friday to try and color what is there right now - it is white! I don't mind the color but my DH likes blonde-he has been such a comfort and strength to me through all of this - if he wants blonde he will get blonde!
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"I wanted to do everything possible ,,,"
I couldnt agree more Ruthbru. Pls bear in mind that what is possible for some is not possible for everyone. It's difficult enough to live with cancer and several other serious diseases and have to face terrible decisions without feeling as though we are not doing all we can.I am doing all I can with the lungs and bones that and underlying health issues I have . For those who can do more, perhaps consider saying a prayer of thanks that your health allows it. Wish mine did !
Thank you.
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Ruth: Like the others, I couldn't agree with your more.
MamaV: Obviously, the chemo s/e's are still affecting my eyesight. Sorry about that! Happy belated one-year anniversary!
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Purple... big big hugs ... no it aint easy. I hear you. In any event I always think its good to be careful what we say to people because you never know what someone is or has been going through, but much more so on forums because not only do you not know people, you dont get to see their complete "tone" like intentions or inflections because we dont have body language and suchlike to go by. Its easy to misunderstand or be misunderstood.
Mama V LOL I'd heard sometime ago that people who had really curly hair came back in straight! WOW Chemo sure does strange things to our hair. Anyway yours looks lovely and healthy with a nice shine. My 13" was just a guestimate and Im trying to remember exactly when I finished last chemo, thats why I put in "about". Still, thats encouraging. I always wanted to know what generally was thought to be average hair growth.
Musical
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Kinda late here but chiming in on a couple things ...
I also felt HORRIBLE on Anastrozole. I took myself off after 2 months - I could barely walk - and my MO switched me to Tamoxifen and I barely notice it, like night and day. I take it at bed time. I am feeling like myself again after 2 months on Tamox. I had an oophorectomy about the same time I switched. Occasional hot flashes that are tolerable. Vaginal dryness got worse after the ooph but both my MO and gyno are champions of Vagifem and it really helps.
Potassium level ... right after i started chemo last September I got a horrible sinus infection and was in the hospital for 4 days. Came home, and 2 days later returned to hospital in ambulance with chest pains. After all the stress tests, etc. it was determined my potassium was low (oh, and I was stressed. Well no shit Sherlock).
DO THE ZIP LINE! I have done it twice - once on the big island of Hawaii, and somewhere else I cannot remember at this moment (damn chemo brain). What a buzz! And not physically stressful as you are in a saddle harness. You can just put your arms out and FLY like a bird! You feel so free!
Much love to all ... I am grateful every day when I put my feet on the floor.
Debbie
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Girlpower: I loved your last line--well said!
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"Purple... big big hugs ... no it aint easy. I hear you."
Thanks much, Musical - I really needed that right about now.
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Purple, sending a hug from me too. You have other health issues that make your way so much less clear. I hope that you are able to work with a good medical team who can help you weigh out your best options.
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I saw my MO last week. She said she would support me in going off the A for a month or two because of my other issues. But she must have ordered another script b/c when I went to pick up some meds from the pharmacy there was another bottle of A. LOL I told her I can't tell if SEs are from A or other meds for lung function. Anyway still on the team for now.
I'll tell you who is not on my team anymore PCP and Pulmonary doc. I am making an insurance change and getting some new docs that can help me through this, I have had enough. My MO explained that it is not that rads were done poorly but that I was very susceptible without knowing it, even though I was trying to tell everyone (docs) how bad I was feeling, but at the time I was doing what I was told to do. Anyway, this is where I am today. Taking charge of my medical care, and making some changes. Even though I have been a medical advocate for others, being one for yourself is more difficult. (IMHO)
Between my annual mammo and my call back mammo in Nov. I went on a hot air balloon ride in CO. It was a blast! Where's my zip line?
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GirlPowerDebbie: Where on the Big Island did you do the zipline? Thanks!
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Several hours on the phone and such a headache,I finally had to call the wonderful nurse patient coordinator to find a new MO,the last one took me off Arimidex and refused to give me anything else and my fiance was driving me nuts by constantly telling me I should have an "anticancer pill". I have tried to find some statistics on how much Arimi would help, has anyone found any statistics on how much lower the risk of cancer recurrence would be with or without an estrogen antagonist pill?
My lips are still peeling and guess some of it is menopause,the derm says it may be contact dermatitis which means that the Replens got in my mouth and so I switched to the store brand,didnt help. I now have KY liquid beads so hope it helps. Anyone know of a brand that is oral fixation friendly? I was thinking of doing the coconut oil homemade pellets that saw on another thread here but was puzzled as to how to get the pellet to the right spot without it melting and if such was safe, I am sure they dont have that stuff in med school so dont think the gyn could tell me.
Yep ladies, I saw the John Hopkins group says soy whole foods are ok just not the supplements but like you say who knows if its GMO cause the USA doesnt require labeling. Heard that Canada makes a lot of soybeans and mustard seeds,who would have thought? Is the US govt paying our farmers not to grow the soybn? Yep Monsanto has been a bad player in agriculture and suppressing news when it doesnt paint them as harmless and helpful for years.
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Layla - If you use coconut oil you can form it into pellets with your hands and drop them onto a cold plate, then store them in the refridgerator or freezer. You'll have to start from slightly warmed refridgerated coconut butter if room temperature is over about 70-75 degrees. You might also try cocoa butter. All you need to do is chip it from a bar or out of the jar and smooth it a bit with your hands. It stays solid at room temperature, so it doen't need refridgeration. I think a combination of the two might work best. Cocoa butter for your comfort, then coconut oil for lubrication. At least that is what I would try based on my current use of them. I'm not in a relationship so don't know how this works in the real world.
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kj - it's ok
My SE didn't show up for about 3 months ... let me know how it goes for you.teresa - thanks - you're sweet
musical - isn't it crazy about my curly to straight(er) hair? I used to have spiral perm (remember those days) curly hair, now the top is barely wavy - even gets FLAT - and the back is curlier. Still crazy! I really thought my curly hair was going to come back even curlier and grey - like a white brillo pad! Ha ha - I have been spared I guess.
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