"Tamoxifen Road" - Support and Encouragement
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Welcome, El and Stan...... Talk with your pharmacist about the need to eat and the timing of the two. There are threads on here for women taking kadcycla. I looked at the list of possible side effects, but am unfamiliar with the day to day experience. You can ask your MO for anti nausea meds to be given the day of your IV.
I had cycles up to the day I had hysterectomy and oosurgery. It was that or shutting down my ovaries chemically. Glad to have you join us!!
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Thanks for the reply Michelle. I definitely fee that this stuff is different for all. My sister has had no se's and hopefully what I experienced was unrelated. I' do receive anti-nausea med with chemo so it was strange to feel it co.i g on. After yesterday's Tamox poll nothing hit me so I will see how things progress.
Glad you are doing well as you have been on it for 3 years
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Aaauugh! Sun sensitivity?!! This is new. I played mini golf for an hour yesterday, had a Coolibar UPF wrap on (even in 80 degree weather) because they say with lymph nodes out to avoid sunburn, but the tops of my hands were exposed. Red itchy bumps last night that have turned into plaques this morning.
SIGH
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el, the day that you get your infusion/iv, ask your MO if you can skip that day on Tamoxifen. The Kadcyla therapy is so important to get through. When is your next one?
Gb, I have never seen the plaque occur. The only time I have seen that, is on my nephew, who had seed warts. Are you using any new retinol product, skincare, antibiotic?
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Michelle..my next will be in 3 weeks. I took the tamox the day of kadcyla and was not bothered til the next day but I will def check in with my MO. My tamox yesterday was uneventful so I am hopeful to manage both.
My mo will monitor my hormones because of age to determine when I should switch to AI.
Thanks.
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Nothing new, nothing at all is different. Other than I went outside, lol.
I had a family member who did tamoxifen awhile back (still had metastatic recurrence)...she got sun reactions too so I can't be surprised. I read I think on mayo clinic (maybe somewhere else but equally trustworthy) that sun reactions can start as bumps that morph into plaques, so there we go. It's not getting worse and it doesn't itch if I don't touch it.
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Gb, I would check in with your MO, with any new side effects.
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gb - ah, The Sun Plague. I'm sure this is biblical. I too have it. It's not a burn. It's ....some weird, brilliant red rash that blazes up with only the shortest amount of sun exposure. I am not prone to burning (mind you the mosquitoes, backflies, horse flies and deer flies make it very dangerous to go outside without being swaddled head to toe). But the other day I was just sitting on the lawn with my skirt yoinked up around my thighs, enjoying the sun, plucking a few dandelions and ... this happened. (sorry world for showing you my fat legs). That literally happened over about 15 minutes. Upon close examination it looks like a million tiny blood blisters. It did not hurt or itch like a burn. It was just ... lobster red. Only my forearms, which are like old leather, seem safe. Anything else is fair game for The Sun Plague. This happened last year too. First time in my life I have ever had this happen aside from being out on the lake in the blazing sun for hours. This, I am pretty sure, is a tamoxifen effect.
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GB and Runor - I wonder if that effect has to do with the proven photomutagenicity of Tamoxifen in human blood? Perhaps the both of you share a similar dna/genetic trait that makes your skin more susceptible to it? IDK. But it is curious indeed. Super glad that's not painful Runor!!!
It sort of reminds of what it looks like when a person experiences a "niacin flush", but that usually is hot to the touch and painful. BTDT.
Light Induced Toxic Effects of Tamoxifen
"The tamoxifen concentration for is within the range of plasma tamoxifen concentration for patients treated with this drug. Plasma concentrations of tamoxifen and its metabolites are 0.40 to 0.65 μM in breast cancer patients with standard oral dose of 20 mg/day [51, 52] or 2.96 ± 1.32 μM in prostate cancer patients with orally administered 160 mg/m2/day [53]. The half-life of tamoxifen in human body is 7 days [54]. In another test, patients given tamoxifen tablets (20 mg/day) had a maximum plasma tamoxifen level of 95 μM and the metabolite desmethyltamoxifen at about 30 μM [55]. Tamoxifen had a half life of about 5 days while desmethyltamoxifen had a much longer half life of 22 days. This means that after a patient is administered with tamoxifen and goes in the sunlight outdoors, the patient may be at risk of light-induced mutagenic effects of tamoxifen."
**as the research shows, as Tamoxifen is exposed within blood to UV, the effects magnify**
Photomutagenicity and phototoxicity of the breast cancer therapy agent tamoxifen
"Furthermore, tamoxifen showed photocytotoxicity and photogenotoxicity in human HaCaT keratinocytes and supercoiled ΦΧ174 phage DNA. This suggests that the photomutagenicity shown in TA102 might be due to DNA fragmentation caused by the concurrent exposure to tamoxifen and light."
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Thanks Spoonie, not painful, thankfully. I read that scientific study. Made very little sens to my simple mind. So it seems some of us become sun sensitive on tamox and I would definitely count myself firmly in that category. So I will stay covered up and fish belly white all summer. My concern is..does this potential for damage carry over into eyesight? Is my future so bright I need to wear shades? I have noticed the typical eye decline that happens once you're past 40. But what is alarming to me is that I can no longer detect colour like i used to. Blurry is one thing, no colour perception is another. I need my colour sense, otherwise I might leave my house wearing the wrong lipstick and no one wants to see that!
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Runor - I'm sure your lipstick still looks stellar! Just to let you know you're not imagaining the color loss. Tamoxifen has a known effect to lessen color perception, in addition to the other vision issues (cataracts, blurry vision, floaters, etc). I would be sure to be seen regularly by an Opthomologist to be proactive. I learned alot about Tamoxifen and the eye this month when I had that urgent care issue with my own eye after I stopped taking it.
"Tamoxifen, a therapy for women with hormone-receptor-positive breast cancer, is known to increase the risk of cataracts and to cause retinal pathology in a quite small proportion of women. In addition, there is evidence that tamoxifen affects the optic nerve head more often than previously realized (albeit at a subclincal level) for women older than ~50 years. Both tamoxifen and anastrozole (a commonly used AI) can affect color perception as assessed under certain laboratory conditions; these altered perceptions may reflect a neural-response sluggishness due to reduced estrogen activity . Other AIs have not been tested in this way."
"Though not a common side effect, breast cancer treatment may affect your eyes, including your vision.Eye problems may include:
- red, itchy, or dry eyes
- watery eyes
- conjunctivitis (pink eye)
- blurry or double vision
- seeing dark spots"
https://www.breastcancer.org/treatment/side_effects/vision_probs
https://www.medscape.com/viewarticle/552140
"Tamoxifen Linked to Swelling Within the Eye
Optic Cup Size Smaller in Tamoxifen Users . The investigators found that the optical cup volumes of the tamoxifen users were significantly smaller than the cup volumes of the anastrozole users, which were indistinguishable from normal."
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Interesting stuff Spoonie! Runor, sorry about your skin, that looks awful. Mine is just a few spots on my right hand, it's much less itchy than it was yesterday. I am not worried about it, just annoyed because it's one more thing to add to the list.
I also think cancer treatment in general jacked up my skin. I am allergic to a ton of things now and never was before (just skin allergies), and the last time I had a cold I broke out in this truly awful viral rash, like kids sometimes get. I puzzled the doctor but she fixed it for me.
Michelle, I will definitely mention it to her along with the laundry list of other things when I see her in a couple of months!
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GB, yes, always keep the MO in the loop. If this is something rare, she will note it and report it. I do not sit out in the sun, and when I am on the boat, I usually have long sleeves on. It gets windy, so I use the Skif sweaters (linen blend hand knitted in St. Louis) for longer hauls. I am very careful with my skin, and use several products to keep it hydrated and plumped up. I am light blonde with blue eyes, so I would burn easily. The area that you had radiation applied, can become reactive with sun exposure. I had 20 days of radiation, 16 full and 4 booster treatments. At one point, while trying to break down scar tissue on my chest, I reactivated the radiated area and caused itching and radiation recall
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Spoonie- thank you for all the info! You have always posted the most helpful information. I hope you are doing well!
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How is everyone today? Busy week ahead which should be very fun. Bought a new nighttime metal crate for my puppies, who are unhappy with their current digs. Kids are in and out, so household is not on a schedule which means that puppies my are not on schedule.
Met up with college classmate, who is MD, today. She took Tamoxifen for 5 years and is fabulous. It was great to catch up. She declined the 10 year dosing due to foggy thinking. I write everything down, and have a redundant calendar system. Bought my second 18 month smaller take it with me calendar.
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Doing well! One week until I officially join the Tamoxifen club. Spoke with my MO again today and feel good about starting.
Michelle - Our poor animals. They get comfortable with our routines and when company comes it throws everyone off. Hope they like their new digs!
Happy for your classmate. Love to hear the positive stories.
I'm a list maker, as well as using the calendar on my phone and wall calendar at the door.
Have a great week everyone!
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@416 I will be here when you get started. Did you ask about starting on an introductory dose
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thx michelle for your response- I decided
to at least try tamoxifin.
My dilemma is that i can find no
forums for ladies over 60 on tamoxifin.
I am low risk and can find no information
on whether risk of side effects is greater than the tiny ( 2%) benefit.
In my case , it seems pointless-
but cancer is a sneaky devil and
psychologically it seems it may give some
peace- which eludes me.0 -
Cassie - I’m over 60 and took Tamoxifen for 5 years. It wasn’t a walk in the park but the sude effects were manageable. Joint pain and loss of concentration occasionally but that’s it. It was worth it to me to have that additional insurance against a recurrence.
Diane
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Thx Diane- you are right about the “ insurance” it will provide- which in
turn gives a measure of “peace”-
I will just have to get the uterine
cancer issue out of my head- If it
isnt too prying- did you also fear this?
and if so, did you have any issues
or tests in your tamoxifen years?
I plan on bringing this up with my MO
in November- however, i have read
that screening for no reason (meaning
screening with no apparent reasons
to do so eg: bleeding) is discouraged.
However, having a baseline makes
sense to me.-are you also low risk?
( me: 7mm idc/1.5 cm dcis: grade 1
stage 1 no node involvement)
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Cassie - I am 55 and have been on T for almost a full year. While the risk for uterine cancer is low, you do have to monitor if you have symptoms. It is a bit of a fight to get screening unless you have bleeding. My gynocologist explained it this way - we know that the uterine lining thickens on tamoxifen so there is no reason to do an ultrasound to confirm what we already know. She will only do a pelvic US if I have pronounced bleeding - not just with a little. However, I am not fully menopausal yet so this might change the approach a bit. I discussed my concerns with my MO and she told me she will order one if I get concerned enough and the gyn doesn't. So I felt better having a backup. As it happens, I have had some bleeding and my gyn has ordered an US for me. But I think it is just my body switching over to full menopause finally as my hot flashes have ramped up along with this change. Best of luck to you on the T hope it is easy.
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My GYN does the yearly ultrasound but I am aware it's a little old school. However when I bleed I BLEED, so I don't really mind the extra check. Well, actually I do mind but you know what I mean... :-)
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I switched the puppies to a new kennel at night time, with a top on it. They refused to sleep in it last night, so I spent a couple hours sitting in it with them today. Thaddeus, the white puppy, was the first one to sit it in with me. Theodore is very skeptical. I am trying to include it in their daily routine, so that they can get used to it. Otherwise, I am on the couch, where I do not want to sleep. My son's girlfriend used the restroom on the first level where I was, and where the dogs are gated off. They woke up and chased her out of the room. She is such a fun free spirit...and we laughed our butts off. They puppies have never done that before. We think, that the puppies think I am the mom dog.
Today was really gorgeous where I live, and I wish we could have taken the boat out. Hoping for tomorrow evening. Thursday it is a trek to St. Louis to Theodore and Thaddeus's breeder, for a grooming. My bff is going with me and we will take in some shopping at Whole Foods.
Right now, I am exhausted from the puppies keeping me awake, and have a 1.5 hour massage in a bit. Trying to get my energy up to enjoy it. It is my final massage of the season, as the class is graduating tomorrow evening. It is a program that lasts one year at our local college. And, every year at the very end of the curriculum, I have a weekly massage. I will be sad, but my weeks are my own, no bocce or massage weekly.
What is everyone else up to?
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Hi Michelle, It's been a crazy few days for us, especially today! I was going to cook dinner tonight, but after this chaotic day we decided to eat out. Went to an Italian restaurant and pigged out on whole wheat pasta. I usually never finish a meal, but that dish does me in! No leftovers.
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I had the biggest surprise tonight~ I thought I saw my cousin at the massage school, but then thought no she would not drive that far. After my massage was completed, the student said to me, "I have something to tell you." I thought, what the heck.... He then said, "I am married to your cousin's daughter." He knew who I was all along, for 11 weeks and did not say a word. ( My mom had 10 siblings, who each had 2 children, except her with three children. Those 21 children went onto have at least 2 children or more. Those 40+ children went on to have 2 to 3 children. Needless to say, I do not know all of my cousins.) He wanted feedback on merit, not family relationships. He is my fav and I will be following him to his first gig.
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Michelle - I did talk with my MO about starting on an introductory dose. She said whatever I'm comfortable with, however I need to get to 20mg a day. She has no problem with dividing it into two 10mg doses if I'd like.
Not doing much this week except working, pet sitting for previous fosters, taking care of my pets and trying to workout every day. I'm exhausted! : )
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@416 That is good news from your doctor. Most MO's do not care how we begin our therapy, just that we begin and get to a therapeutic dose. I take my Tamoxifen at 8pm and again at 10-11pm, the 10 mgs. If I need a snack after the first dose, then I have it. By the second dose, I am tired and fall asleep.
My dogs won't stop barking at night. I think we have so many people in the house, coming and going, that it is disruptive. My daughter and her bf go back to school in August, but my son and his gf will be coming and going indefinitely, or until he decides if he is going to law school. One quarter left to commute to Chicago for him one day per week and then he finishes his master's degree.
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Spent the day yesterday in St. Louis getting my puppies groomed by their beeeder. Long drive to do it, but so worth the care in grooming. They are still not in the groove of a 6 adult household and do not rest well. It went from my dhand me, to six people. Not sure of a solution, but working toward one everyday.
DS was born on July 4th and now will be in town for his birthday, for which I have to plan a family gathering. My niece is in town before her cross country concert series and headlines a huge Midwest event tomorrow. Too hot, not going. Waiting to see her sing in my living room.... I have AC.
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Hey, Loves!!!! it is really hot in Illinois today. I am in the house and very hot. Just pushed thermostat to 71 degrees. Working on just de-wrinkling a few things, and hanging some stuff. When I was a kid, I do not remember it to be this hot, so early. We no longer seem to have spring weather in Illinois, just winter and summer. The Tamoxifen probably increases my heat sensitivity too.
Returned the dog crate with top on it, the dogs would not go near it. We are back to playyard, having some free roaming of house so that it is not a mystery to them, and trying to get some sleep at night. I love my son and daughter, dearly. But, now know why my sister in law, had her kids stay in their college cities during the summer. I want them to have a stable home life, in addition to school life. So, it is best that they come home in the summer. I do like getting to know their significant others, who feel comfortable at our home 24/7. It is just alot, with the dogs.
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