I'm new to the diagnosis, and to posts

[lashinator]

I was diagnosed with stage 2 breast cancer in 2014. Had a double mastectomy and chemo. Currently diagnosed with Stage 4 liver, had a Lupron shot, and started Ibrance and Letrozole 2 days ago. Heard so many side effects are possible, but desperately want to believe I can avoid them all. When would these potential side effects kick in??? I dont want to be somewhere and unexpectedly feel any of the long list of things possible...

[nstonerocks]

You are overwhelmed which is perfectly normal. The uncertainty of this disease and its treatments is hard to deal with. Side effects vary from person to person and even week to week for some. Letrozole can make your joints and muscles ache like you have arthritis. Ibrance can cause hair loss and fatigue. There are many other side effects of these drugs that you can look up and/or discuss with your doctor. I don’t think anyone escapes them all. But nobody has them all either. I look at it this way when I’m dragging and my hips hurt: I’m alive! And I’m no optimist but you have to figure out how to cope and how to look at things in a way that gives you hope and stamina in the midst of so many unknowns and variables. Be patient and kind to yourself. You just got hit upside the head with this diagnosis. It is a process Reach out for support here, via phone or in person support groups when you are ready. If I can deal with it believe me you can too. 🙏

[Bluebird77]

Hello. I also have mets to liver and am on Ibrance and Letrozole. The side effects came upon me gradually over the first month. They did not hit suddenly for me. In fact the side effects were worse in the first few months and then my body seemed to adjust somewhat. At this point I have a pretty good idea of when the worst few days of the Ibrance cycle are for me and can plan around it. I don't know much about the Luprn shot, as I has my ovaries removed instead. The sudden menopause did cause hot flashes within a few days of the surgery, but they were bearable. It's probably different with the shot.

[Euebdbdbddh]

Hi , I have hot flushes, migraines lasting for 3 days, joint pains , low energy, hair tinning etc . But u don’t have to get any of this side effects , it’s different from person to person . I am still working , taking long walks , yoga , gym .... in my head I take vitamins, I know it’s stupid but it helps me whatever helps right :)))

[blms in reply to Euebdbdbddh]

Supplements are not stupid! Dont let oncologist tell you so as they have virtually no training on nutrition.

[Hidden]

Hi lashinator,

I have METS To bones. I retired so I can try to enjoy some free time at last. I have been on Ibrance 100mg and letrozol for 18 months. The most side effects I had was fatigue,hair thinning, and sometime nausea. Just stopped on Faslodex. Will have my second. Shot today. I find the more I sit and feel sorry for myself the worse I get. So I make myself get out of my chair and do something until I get tired or my back hurts. Then I sit have some water and make a list of what I will do next.

You are new to this but this group talking is great. I was convinced I was going to die in 6 mo or a year. When the women on this group tell you they have been fighting ''tis for 14 yer it gives you hope. Now I am sure I will be here to see my new granddaughter being born, or I can plan that cruise etc. just follow doctors orders. When one medicine stops working they will have a new one.Read some of these posts and they will give you hope that it will be ok. I never read the side erects until something feels different. Then I will check side effect list. Too scary! Hope you do well on your meds. Will be thinking of you.

Barbara

[lashinator in reply to Hidden]

Thank you sooooo much

[HopeinNJ]

I’m on Letrozole and Ibrance. Just finished 4 th cycle. Doing well. No real side effects. Working full time and so thankful to have these meds.

I think you’ll do well. It seems like most do.

[blms in reply to HopeinNJ]

What dose? Have you been moved to lower dosage from the start?

[HopeinNJ in reply to blms]

I’ve been on full strength 125 from the beginning. No real issues. WBC lowered but not where I had to lower my dose. Some diarrhea at times. It’s really very tolerable. Yes fatigue like everyone else but that too is manageable.

[blms in reply to HopeinNJ]

Im wondering if the dosage affects people of different body structures in a different way. I am 52 and I weigh 118 pounds. Maybe they want 25 was just too much for my size? Not sure what do you think? Also where are you from New Jersey? I live in Bethesda now which is outside of Washington DC, but I was raised in Pennsauken.

And if you were outside of the Philadelphia area where you going for your treatment? Or near New York are using Sloan ?

[HopeinNJ in reply to blms]

I went to Sloan for a second opinion and they concur with my present treatment. I’m near Morristown NJ.

I’m not sure about dosage and size. That’s a good point. Look up Mary’s Place by the Sea. Just returned from a free retreat. I’m sure you’ll find it relaxing and helpful in many ways.

[blms in reply to HopeinNJ]

I did And requested a day but have not heard back as yet

[HopeinNJ in reply to blms]

They usually get back quickly. Call the number. I got immediate response calling the number.

[blms in reply to HopeinNJ]

Great will do!!

[blms in reply to blms]

I did and requested a date but did not hear back

[lashinator in reply to HopeinNJ]

Staying on the drugs, but have my second opinion at Sloan on Wed. Just need to make sure I'm headed on the right path.

[Mimiholl]

I had nausea the first few months and took a prescription to calm it. I take Ibrance and letrozole in the morning with breakfast and find if I just sit and watch tv it passes so no longer take anything. I also had excema that flared up so I took Claritin that eventually cleared up too. Hair thinning , hot flashes,aches and pains and digestive issues I can live with .

fatigue has never left. But the meds are doing their job so that's what counts. You'll get through ...you've been through much worse

[BeckyHobson]

I like the way you think! No worries, you are going to be in the grocery store and double over. Side effects in the beginning are usually blood related as in low white cell counts. Fatigue is huge but you adjust over time to it.

I retired when mine came back 2 years ago. I applied for SSI and was approved immediately as have a few others in this group. My biggest issue is the low white count and neutrophils that leave me at a pretty high risk of infections. However, I have a life to live and lots of places and things I want to see so I don’t sit in my house 24x7.

Welcome to the group!!