Melt down

[Clair19]

Yes, I had one yesterday, crying my eyes out at the pharmacy. Of course my good friend works there so I went a little nuts. I have considered stopping treatments for a bit since things are stable. I’m thinking about a couple months to get my body healthy again. I just had a scan and 6 months of IV Doxil aka The Red Devil. I had the Ibrance almost knock me down for the count with dangerous blood levels. Has anyone else considered this break? I think the toll of it all and cost and I just want my body to take a break and start back to gym. I’m not even allowed to be in crowds, shop, visit my friends. Going on 10 day vacation in June and I can’t go with my blood all messed up. Maybe I just want to be normal for a bit. Thanks

[missa13]

Clair19 , I can't speak to your question about taking a break, but I just wanted to drop you a line to say my heart goes out to you today <3 <3

[Clair19 in reply to missa13]

Thanks,Yes my poor husband gets the brunt of it. It’s great to vent with people who are going through this type of cancer. I know I’m not the only one and I need to be strong. Thanks for responding to me. Leslie Clair

[nstonerocks]

Hi Clair

Never had the Red Devil but understand how you feel. I don’t have medical advice for you but I would not stop Ibrance unless told to by my doctor. If your levels are dangerously low I assume you’ll be taking a few weeks off until your levels are better. I guess I’m afraid to take any risk. Do u work? Can you take a few mental health days? Work In a day at the spa? Go somewhere for a long weekend? This damn disease is a constant dance. It takes a lot of psychic energy to have a ‘notmal’ day. I hope you felt better after the cry. Hope you have a restful vacation planned. There are days I’m just dragging and I don’t think anyone not in our shoes understands how bone tired you get. I recently had a lot more stress because of a family issue and I wonder how much can a person take? Sending you a hug from someone who gets it.

[Clair19 in reply to nstonerocks]

Thanks, yeah I had a little tantrum. I’m sorry about your family problems, hope things get better. I’m going to Ohio land of Labron James. My husbands family is there and I’m close to 3 of my sister in laws. They treat us like royalty and they spoil us. My son is all I have left and he’s grown, so I’m blessed to have them. I don’t work as a Nurse due to pain medicine. I have been off Ibrance 2 weeks will be 3 when I go back for blood work. The Nurse just called to ask how I was doing on Ibrance, I told her not good nearly put me in hospital. So 7k worth 21 pills in my drawer, Ibrance I can’t take. I think they think some of us are seeking drugs too. I went to get my script filled 28 days not a month and told to early, that upset me. I just have mbc no pain just want to get high, yeah like I’m drug seeking. I don’t even take much. All these real drug seekers has made it hard for people who really need them. Sorry I’m rambling now that is how hard it seems things have become. Thanks for reading and responding and have a great weekend. Leslie Clair

[nstonerocks in reply to Clair19]

Don’t apologize, you are right! Some people, especially in healthcare, can be so judge mental. You probably look good so they don’t get that there is real pain and suffering underneath all that. Even my husband, who is so good and such a support, really doesn’t understand that when I say I’m tired or my knees hurt, it’s pretty extraordinary fatigue and joint pain. I’m a nurse too. God forgive me for making snap judgements in the past. When your counts come back up and you are rested and less stressed you can look at this and forgive these people. They don’t know how blessed they are not to understand how all this feels. It’s amazing how feeling lousy and having low counts makes us vulnerable to feeling emotionally wiped out also. So glad you have something to look forward to really soon. Hang in there. You will feel better. This will pass and you will feel stronger. I’m going to a retreat in 2 weeks to recharge myself. Sometimes we have to figure out how to save ourselves. 🙏 ❤️

[Clair19 in reply to nstonerocks]

Yes your so right... my oncologist always says Leslie you don’t look like a cancer patient. What does a cancer pt. Look like inside, just because I choose to keep myself up and not complain. That is where I get upset 😢. I want you to have a great retreat and get rid of all the pain and negative energy. You will come back stronger and relaxed 😎. God bless you and thanks for responding to me.

[Tja1970 in reply to Clair19]

I hear that everyday, you look so good, how can that be. It’s very frustrating.

[Boogitymom]

Must be something I the air, I had the same thoughts, tired of being tired and feeling lousy day after day. I’ve been on Ibrance 27 months and my labs have been bad since January. The only reason I keeping taking Ibrance is because I’ve had no progression. See my onc on Monday and going to ask about taking some time off for my body to physically heal. I did treat myself to a Reiki healing yesterday and it helped tremendously to change my mind set. Keep looking forward to your vacation and hang in there. There will be brighter days. God bless.

[Snowcone16 in reply to Boogitymom]

I was very tired since February...thought my iron was low but wasn’t sure. Felt exhausted 2 months. Had blood work on 4/24 and dr said “you need iron supplement”. I started taking them the same day and felt like my old self. Still do. Just reviewed labs and see my iron was at 25. Normal range is 50-125. Maybe have them double check? God bless.

[Grace301]

We all need a break, a change of pace, something different to look at - think about....YOU are the one who knows YOU best & if taking a break will help you in gaining strength and making you feel better, maybe you should consider it...wishing you happy, peaceful days.

[Tja1970]

Hi Clair

I was told that this new round of drugs that I’m taking is the last oral meds they can do. I decided a long time ago i would not do intravenous chemo ever again. I have Mets to the liver and bones. So i get it. It’s so hard! I’ve decided that if this last round doesn’t work. I’m throwing in the towel. Take a break and do what’s in your heart. If you want to take a break do it. It’s your life and your body. People have given me millions of opinions but ultimately you have to make that choice. I am waiting for my meltdown. I feel sad sometimes, but haven’t had the meltdown since the metastatic diagnosis 3 yeas ago. Head up buttercup!

[Clair19 in reply to Tja1970]

Glad to hear from you. I’m sorry this is the last oral medicine. May I ask where in your bones? How long have you been on oral medicine? Sorry for all the questions. I think the 6 months of the Doxil has finally caught up with my body. My legs, back got tan and because I’m olive skin it did not peel. It’s made my skin age 10 years and that’s why I’m like I need a break but my husband is upset 😠. He says no, my oncologist will say no. My oncologist seems to think I can go into NED... I know that’s very hard to achieve. Yes we read miracles from time to time but realistically? So I’ll go in Thursday and see what my blood is doing. I just want 10 days of summer fun with my Husband and Ohio family. What IV Chemo did you take. Thanks 🙏 to you and your family. Thank you for supporting my feelings. Leslie C

[Tja1970 in reply to Clair19]

Hey Clair,

I was originally diagnosed in 2010 and last scan before my 5 year mark showed Mets to the liver, and now it’s in my spine. I do not have any pain, and i keep living life, but I’m also a huge realist and have read the science and have known others in my position and have done iv chemo as a last resort and their quality of life went downhill fast. I was on Ac and taxol in 2010 and it was so harsh i swore I’d never do iv drugs again. My staging was also 3b on initial diagnosis so i was pretty advanced and have a great doctor who’s super aggressive, but i have made my wishes clear that if it’s iv or nothing else. I’m going to enjoy my life and travel while i still can. You have to do what you feel. I’m single and my friends and parents are always telling me not to “give up” as far as I’m concerned I’ve made my choice and that’s it. If i can manage with pills and shots I’m ok. Listen take time to enjoy your vacation is that’s what you want to do. 10 days in the grand scheme of things i do t think is that bad. Happiness in our situation is what’s most important

[Clair19 in reply to Tja1970]

You must be younger. I’m older or I think I’m...😃. Maybe I feel older. Your blessed to have your parents, both mine died 28-26 years ago from cancer. My Mom died first then after taking care of mom he died. I was always going to fla to do what I could. My younger brother had cerebral palsy and he came to live with me for 12 years and he passed away at 39. That took a toll on me so I threw myself into Nursing and 17 years later here I’m. I’m glad I can feel better here and express my feelings good or bad. Thanks

[SeattleMom in reply to Clair19]

Leslie--you are a saint! God bless you and shine His healing light on every cell in your precious body. After all the caregiving you have provided to others, you are the last person on Earth to deserve this diagnosis. May you enjoy a fabulous vacay with friends and family!! XXOO Linda

[Clair19 in reply to SeattleMom]

Your so kind to say that, far from a saint but always there for people who have it tough. Yes Paul has MS but keeps in shape, and I’m trying just harder because of lung Mets. We always have tried to help those who can’t. We even lost our home and felt wronged but never stopped helping others. Now we have a Condo we save money all the more to help those in need. I told a friend who now on weekends cooks hotdogs and goes to the underpass to pass them out. One young man we just never knew what happened. we fed and clothed him, he just vanished. So sad this is a big problem in the United States swept under the rug. Anyway thanks for your kind message.❤️

[Clair19 in reply to Tja1970]

I wonder why the Doxil didn’t mess up my blood work like Ibrance did? At first I was really sick then it stopped. My labs where mostly good. I guess everyone is different.

[Dartyus]

I truly understand about wanting to be normal. Sometimes I want it so bad. This is my second time with cancer. I am doing well thanks to God. But it would be nice be my old self. Keep the faith and know that you are not alone. God bless you.

[Clair19 in reply to Dartyus]

Thanks for that. May I ask how long have you been on treatment? I’m trying to be positive it’s just not physical it’s so mentally draining. The Nurses and oncologist try to make you feel things will get better but they are not going through what all of us are dealing with. Thanks 🙏.

[Mcap]

Sorry to hear your having such a bad time with the ibrance. What dosage are you on? Has your doctor talked about putting you on one of the other targeted Therapies that's similar to ibrance? Hoping your numbers come up soon so you can enjoy your trip.

[Clair19 in reply to Mcap]

I just started it 3 weeks ago. I have a full bottle I have not opened. I heard the first couple of months will do this. So I will see Thursday how my blood work is. Thanks I’m not going till June 28th. I have a few things to do and it seems like it takes forever. What would take a few minuets seems like it takes an hr.😮. So I need to work on building my strength up. Thanks

[Clair19 in reply to Mcap]

100mg, sorry. Maybe I can take the 100 every other day or something like that.

[blms]

i am disappointed today as at day15 m neutrophils were 1000 (ok), day 2 -1400 (what!!), now on day 26 (900--what the hell!). I thought Id be oing up now that Im off week. Bt, guess not. I am leaving this MOnday morning for a week in Florida for my youngest sons college graduation. I was hoping to be up to may 1700 by now and go with ease. But, I guess there is no such thing. All the same, I am going to have a great time and try not to think about it. My energy has been good all month, today not so much. I hope it is stronger on Monday morning when I get on the plane. Leslie, you need to get excited about your trip and say to Hell with BC and plan now on having a great time. I am on 100 mgs. But am going to talk to my doc about going to 75 on my next. visit and then I will consider taking every other day in the future. I am pretty convinced that the onco will not want that to happen as there is no way that is any kind of protocol. But that does not mean I will not do that. So, I underst

[Hort09]

Hi , I have taken the red devil the first time I had breast cancer 10 years ago . I was diagnosed with mbc in November 2017 in my lungs . I also have fibromyalgia . I am not sure if you can take medical marijuana where you live but because it is equal cbd and th there is no high , you don't need all the other drugs . I don't take Ibrance yet so I don't know what that's like yet . All of this is tough n no one knows what you are going through unless they are going through it . If you can find a person going through what you are I think that s the best person to talk to .

[PJBinMI]

I've been living with mbc for 14 years (as of 3/1) and have picked up all kinds of weird bits of information. Did you know that emotional tears are different chemically than tears from dry eyes or cutting onions? When we shed emotional tears, we are literally getting rid of some of the chemicals that contribute to our feeling blue! Amazing bit of info, and one that has made me feel a whole lot better about having a crying melt down occasionally! There is a real biological basis for feeling better afterwards! Something else I have realized is that the various drugs we take for cancer effect us very differently and some of them, like Ibrance (most of the time) may have an impact on our blood chemistry at first, but that may very well get better within just a very few weeks on it. Other meds we take are the opposite--side effects are likely to start mild and get worse. This is a powerful reason to have frank talks with our oncs about how we are feeling! Some of the side effects can be taken care of with other meds or adjustments in dose or time of day we take them. I've been on hormonal meds for 14 years and have needed Effexor since I started taking it about 2 years in to reduce hot flashes. I have warm surges that are tolerable and not the hot flashes that turned me lobster red with sweat pouring down my face and body...... IF all parts of my body worked as well as my sweat glands, I might live to be 125! I needed sleeping meds to get any kind of restful sleep at night for about 2 years early on this journey with cancer. I have heard of women taking as low a dose of Ibrance as 75 mg per day due to side effects with larger doses. And when I started out in treatment for mbc, targeted therapies like Ibrance and Afinitor were not around. I got almost five years from Femara and then over 9 years from Faslodex. I could only tolerate Ibrance for 10 cycles and developed a lung condition called interstitial lung disease, which the pulmonologist described to me as being like gunk between the little air sacs of the lung. I strongly suspect Ibrance caused that. I just started Aromasin about a month ago and don't know yet whether it will get the cancer cells back under control. I still have only bone mets and have never had pain from those. I feel very very lucky to have done as well as I have for so long but I will face into dying when the time comes and am rather curious what it will be like! I have deep faith and look forward to whatever it is exactly that is next but am not ready to leave my family. My husband and I met when we'd each been divorced a long time and were married just two years when this cancer was diagnosed. His first wife had MS and he learned alot about care giving during their marriage and I am sad for him that he has to face losing me, too. We each have grown daughters, him two and me one, and we've done well as a blended family! I have two step granddaughters and enjoy them. And I get a kick out of watching my husband with his little granddaughter! They are really sweet together. I've been able to be pretty direct with all our daughters about this cancer and my daughter has been able to go to important onc appts with me, along with my husband. I did go get a second opinion from a bc specialist onc at U of Michigan Comprehensive Cancer Center and they both went with me. I'll go back there anytime any of us feel as though we need more direction than my dear experienced local onc can give me. I've always needed anti anxiety meds for MRIs--the noise of the machine makes me want to climb out and hit somebody! lol Most of the women I've known face to face who have this lousy cancer have needed meds for depression, anxiety, and/or sleep at some point. Living with this cancer and cancer treatment is not easy, that's for sure! Don't ever be hard on yourself about that! It wears us down....plus of course, none of us are getting any younger.

[Clair19 in reply to PJBinMI]

Enjoyed your post, just saw it. My husband has MS for 25 years and does very well. I give him Rebif injections weekly. I’m glad you have such a positive attitude. I’m taking Valium 5mg twice a day and 10mg Ambien to sleep. My GP had me on more but my oncologist said I was on to much. However he had no problem with Oxycontin 10mg until I told him to strong. I just wanted my Tramadol 50mg, he cut me back to 3 24 hrs. I take 2.5 ml twice of Morphine in 24 hrs. I’m feeling like a druggie when I ask to get filled. However my pharmacist will let me get them filled like 28 days. I don’t sleep well even with the meds, never did. But I’m glad you wrote. I have a grown son no Grandchildren darn.. and 4 sister in laws whom I’m very close to 2... My husband never complains when I even was on IV Chemo. He works from home which is good. I should not complain people who are way worse than me. I’m glad you are enjoying life and your family. Thanks

[PJBinMI in reply to Clair19]

I'm glad your husband is doing well with MS! The two of you certainly have more than your share of long term health conditions. I don't look forward to the day that I need pain meds for the bone mets but I know I will be really glad that they are there! I have alot of fatigue these days but that is really about the only cancer/cancer treatment problem I have on a day to day basis. I took a four hour nap late this afternoon and now I can't get back to sleep!

[Snowcone16]

You have to keep finding and hearing the positive stories. I’m new to this...but I lost 2 friends to this in the past year, a 3rd to ovarian. I get “the break” but I read so many stories of people finding their combination of pills and shots. And some are at 4 years and some 14!

Please look into other things that might be making you tired. I had low iron for 2 months and overnight it was fixed w supplement. I’m 47, on Ibrance, letrozole, xgeva and falsodex. I was previously stage 2 for 18 months on tamoxifen.

I am trying everything...exercise, hypnosis (YouTube has healing hypnosis), plus I saw a hypnotist, nutritionist, juicing, supplements...prayer.

Remember this feeling of frustration is temporary and it will pass. That’s the hardest though...when we are in it, it’s hard to see the silver lining or to think you’ll feel like your old self. But, it does happen.

Hugs.

[Hidden]

Hope your meltdown helped - I think a good tantrum now and then is probably the release so many of us need. I have not been on any IV chemo - after tamoxifen and Laradex failed over about 4 years I took Xeloda for almost a year then Navelbine before that too showed progression after 4 months. Then my medical scheme suddenly approved Faslodex for my care plan - but NO Ibrance, or anything like that (Too expensive according to them and certainly I don't have enough to pay over R30000 a month!) Faslodex did not slow progression either - the liver spot is getting larger each scan. I am very scared of IV and the side effects and the way it will affect my quality of life and that of my sister (we share a home). My oncologist suggested that, as I am virtually asymptomatic - no pain, nausea or any other signs of this damn disease other than bad scans and counts - I should go off all meds and enjoy my life till I need help again. I was in two minds but what she said made sense - I am 73 and love my gardening and our trips camping in the Kruger National Park (we live near by) so why not enjoy more months of that life and undergo the strains of chemo (maybe) when I really need it. Some would say should I not be trying to stem the progression? Well maybe so but it seems the eventual outcome will be the same no matter what I do now so live while I can. If your body is feeling so compromised maybe you should suggest a rest for it - often our bodies are wiser that we are!

Good luck and enjoy your holiday and stay strong.

[Clair19 in reply to Hidden]

I totally respect your decision. My Ibrance was paid for by the National Cancer society. I had problems with my Wbc so had to take time off. I know it’s very expensive I have a 21 day supply worth 6k just sitting until my counts come up. I’m younger but feel after 6 months of IV Chemo I needed a break. However I did fairly well on Doxil, he would give me fluids with mine so not bad. I hope you enjoy your time and never need any more chemo treatments. Have a wonderful weekend.

[Hidden]

Thanks, Clair. Your comment about chemo makes me feel a little better - it seems to affect everyone differently. However I am just jogging along now enjoying an asymptomatic break from pills and injections. I suppose when the time comes I will have to make some heavy decisions but will leave all that to time.

Have a great week