Women on Ovarian Suppression + Hormonal Therapy Unite!
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Hi all, sharing responses from my oncologist's office to my questions about what it means to switch to the monthly Lupron injection to larger time span, and also if my prior treatment would impact outcomes, in case helpful to others.
- Yes, it is a larger dose of 22.5mg, that lasts over a longer period of time.
I don't believe you would feel a significant difference in terms of side effects with the larger dose.- Regarding efficacy, in general, the large dose of 22.5mg can be given every 12 weeks, I give it over 10 weeks so that you do not have a decrease in ovarian suppression towards the end of the 12 week time frame.
- We would advise you to continue good hand hygiene and social distancing. Your last CBC lab demonstrates normal white blood cell count so not suggestive of immunosuppression. Regarding prior radiation, and in discussion with the radiation team, we don't believe there is a significantly increased risk of pulmonary complications but caution you to take the appropriate precautions for infection prevention as noted above.
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I’m almost to the end of the two week delay on my lupron injection. Need to call them tomorrow to see if they’re still planning to do it as scheduled on Monday. In the week and a half of taking no hormone meds my peak flows have increased and some of the mysterious breathing problems I’ve been having have started to improve. I guess I’ll go ahead and get the shot and restart anastrozole and see what happens, but if things get worse again I may be faced with some interesting decisions. Meeting with new MO (mine left) in May
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They’re delaying all Lupron by a month to avoid bringing people into the hospital, so no injection on Monday.
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what dose of Lupron is everyone on per month? I do 3.75mg, but know of someone who is on 7mg... just wondering what is normal?
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I started taking anastrozole over a year ago. Ive done a hold for two weeks at one point in time for headache reasons they went away and when I started taking it again the headaches didn't come back. In September I had an oopherectomy. I’ve had joint pain in my right hand and I continually have soreness between my left shoulder blade and spine. Mainly if I cough or sneeze, I can feel it. My Onc seems to think the lack of estrogen is causing the joints in my fingers to hurt due to arthritis onset and lack of estrogen. . My ONC ordered a chest CT to look at everything an didn't see anything to be concerned about in my back. Anyone else have upper back pain soreness on Anastrozole? I am trying CBD to see if that helps but would love any other helps as well. Thanks!
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Christiekoe, I take letrozole and I have the same aches and pains. All new since I started the anti-etrogen treatments. I also had oopherectomy this February. I think these are side effects we have to live with. However, since i stopped Lupron shots and replaced it with oopheroctomy, I feel slightly better. But shoulder pain, hand, elbow, hip... you name it comes and goes. Yoga makes it better. I also have found that sleeping in the opposite side of the pain, helps. I suffered from so much pain on my left shoulder blade and left shoulder that I couldn't sleep. Try to sleep on your right side for couple of nights and see if your left shoulder blade pain gets better, mine did. Also, in the morning and several times during the day if you can remember to rotate the shoulders it helps as well. Let me know if it works for you.
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LillyWasHere, thank you for your reply!! I appreciate the help! I will definitely try these things!
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Hi ladies, I think I have developed acid reflux from being on Lupron and Aromasin for 3.5 years. I started having swollen throat a few months ago, and now I always have sour or salty taste in my mouth, but I've never had heartburn, which makes me wonder if it is acid reflux or not. My recent blood work all looks good.
Do you guys have similar symptoms?
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Hi ladies! I feel like someone reading this may have input on my situation.
I see the oncologist on Thursday. Found out my oncotype is 10. I am 43. 8mm of cancer in my one node they took out. Mass was 2.5cm. All other info is below.
Was anyone else in a similar situation? When I think about chemo I get very nervous to forego it....and then I get nervous it might be overkill. Wondering if she'll recommend suppression and hormone therapy?? Thoughts?! Thank you!!!! 😘
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Hi kathabus, I had cancer in 2 nodes (1 macro, 1 micro) and did not do chemo. My Oncotype was higher than yours (17). I would be shocked if your MO recommended it. It's not just that the Oncotype estimates your risk of recurrence (at 10 yours is very low), but it also evaluates how effective chemo would be for your type of cancer. Cancers with low Oncotype scores get little to no benefit from chemo (chemo is better at killing the fast-growing cancer cells common in aggressive cancers). So you're essentially getting all the downside of chemo with almost none of the benefits.
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Just came into say hello to everyone and hope you all are safe in the COVID-19 mess!
Its soo nice to have this thread, Ive been doing Arimidex and Lupron since 2016.
I was able to get my quarterly Lupron injection at home by a visiting nurse, this eased my nerves a bit as I didnt want to go outside and catch anything. Is this an option for you all??
Being at home is NOT good for my food cravings , its also fueling my laziness and I really need to start exercising. Anyone else caught a lazy bug and hasn't worked out or had some physical activity while inside??
How is everyone holding up?
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Hey everyone,
My MO asked me if I wanted the 3-month Lupron shot so I don't have to keep coming into the cancer center each month (especially due to Covid). I was hesitant, though, since I thought I read some people experienced more side effects on it. Has that been the case for people here? My main side effect has been hot flashes and I don't want those to get worse.
Thanks in advance! I hope everyone is doing well. This whole pandemic makes everything more complicated.
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Hey peridot, I switched to the 3-month Lupron shot for that reason, just temporarily during the pandemic. Had my first 3-month shot yesterday. So far, I haven't noticed anything different, but it's a little early to know for sure.
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I get the three month zoladex shot and I did not notice any increased SEs
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I was on the 30 day shot for 6 months and have had the 90 day just once. I didn’t notice any difference in SEs
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Thanks everyone! I'll ask my MO more about it when I see her next week. Need to make sure the insurance covers it first.
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Hi Guys I am on exemestane and zoladex and have some cycles of herceptin and perjeta left. I have been experiencing pain in my non cancer breast when I press it or lift it. Has anyone experienced this?Thank you
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Hello
I do know for sure that Aromatase Inhibitors can cause pain the breast, Ive experienced it too while being on Arimidex. Id recommend getting it checked out by your oncologist for reassurance.
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Went for my three month zoladex shot today. My temperature was taken as I entered the building, then I was allowed to go to the infusion suite (after it was determined that I had an appointment). I went by myself, but no one would have been allowed to come anyway. I was alone in the waiting room. When another woman came in, I was quickly taken from the waiting room to the suite. I don't like getting these shots, not because they hurt, but being in the chemo suite takes me back to last year at this time. I really feel for those going through chemo during quarantine.
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Did anyone else develop nonstop headaches after starting OS and HT? I started OS and HT three and a half weeks ago. The headaches I'm having are unbelievable....OTC painkillers don't even help. Does it go away? The onc said it could be from Lupron taking away my estrogen, and it could take 3-6 months for me to adjust, if I do at all.
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Laurenci, I went in for my injection and zometa infusion and that's how it went for me too. So weird. I get the 1 month shot and they had me take a month off as the pandemic took off but had me come back this week. Third zometa infusion and it still makes me feel lousy. Not as bad as the first time, but I thought it was supposed to be fine after that.
Danee, I don't remember headaches when I started (not to say it didn't happen- everything is a blur at this point), but I definitely got frequent migraines during my month off. Hormones shifting around can definitely be a trigger for that. Did they give you any suggestions of things you could try?
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Hi! Anyone have minimal side effects or way less traumatic time than you anticipated? Looking for postive stories. Anything to help with hair thinning that worked well?
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I have hot flashes that I don't enjoy, but otherwise I feel like I've done pretty well with hormonal therapy. I started losing a lot of hair when I started tamoxifen. It never got to the point that you could see the thinning, but it was really noticeable to me. I'd put my hair up in a ponytail and it would seem so skimpy, whereas before I always had thick hair. I did a lot of research and also talked to my twin about it. She's a plastic surgeon who had trouble with hair loss herself due to stress. There are a few things that I found helped:
1) Viviscal - this stuff is pricey but it absolutely works. My hair loss really slowed down after I started taking it.
2) Biotin on its own doesn't have a lot of evidence to back up its usefulness, but I found a recommendation from dermatologists at Cleveland Clinic to take the following biotin/b-vitamin combo:
- 3 milligrams (3000 mcg) biotin
- 30 milligrams zinc
- 200 milligrams vitamin C
- <1 milligram folic acid
The brand I found that has this combo is Nature's Way Biotin Forte 3mg with Zinc.
3) I haven't used it, but Rogaine is the old stand by. It's supposed to work really well for thinning hair. There's a formula for women (pretty sure the only thing different is the packaging). You can buy it over the counter. It's a foam you put on your scalp every day. If my hair loss got worse, that's definitely something I'd turn to.
Good luck with everything!
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I did have headaches at first, but after 6 to 8 weeks after starting hormone therapy they resolved. Ibuprofen didn't help me either.
I've still been going in for monthly Zoladex and Faslodex injections. I am still somewhat nervous about possible Covid-19 exposure, but they are taking precautions, and I'd be more afraid to go off these meds in my case. I'm doing well on these overall.
Hope everyone is hanging in there okay. It's an extra hard time to be in active treatment for sure.
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Wanted to share that I had my esteroidal levels checked at the end of my 90 day zoladex and they were good. The value was 2 and post menopausal is meant to be less than 15.
I just had the 90 day injection, for the second time.0 -
I had my first Zoladex injection yesterday at the local hospital. Very strange going into an environment like that, it’s been 4 weeks since I ended radiation, so it’s a drastic change in the environment. We are screened at the entrance and then escorted by security to our location in the hospital, and escorted out of the office as well. It’s definitely an eerie feeling, and to go at it alone as well for the first time.
Can anyone tell me how long it took for them to start experiencing side effects? I won’t start my Amatrose for 3 weeks.
Thanks and stay safe!!!
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Sykes20104, I had a similar experience this week getting the shot. Freaky for sure! . I have really not had any side effects from the zoladex shot ( maybe hot flashes, but I have had them on an off prior to diagnosis in 1/19). I have been on zoladex since January.
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My MO switched my from Zoladex to Lupron in March. The hope was that I'd have less side effects, as apparently some women tolerate it better. My hot flashes are definitely way less frequent and severe, which seems to be due to the switch.
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I started Arimidex+Lupron two months ago. And almost immediately I noticed skin changes. I can deal with dryness, but I don't know what to do with skin elasticity. I just turned 39. Please, please, if you found solution how to slow down aging, share your advice.
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Laser therapy can help with elasticity. Even IPL or lighter "photo facials." Also, having a good skincare regimen helps. Especially using a retinoid. I use Differin since it's prescription strength yet over the counter and cheap. It also helps the breakouts I've been getting since I went on ovarian suppression.
I also recommend using niacinamide and serums or moisturizer with peptides. The Ordinary has some really affordable options (Niacinamide 10% + Zinc 1% and Buffet for peptides). However, my favorite peptide product is from Paula's Choice (it's called Peptide Booster). The formula is a bit more elegant & effective in my opinion than the Ordinary, but it's more than 3x the price, so it just depends on how much you want to spend.
Maelove also has some great serums that are much cheaper than their high-end counterparts. I love Glow Maker which is even better than SkinCeutical's extremely pricey C E Ferulic serum.
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