Weak and Discouraged

[Gram10]

I saw my onc yesterday and she took me off Ibrance which had been reduced from 125 mg to 75 mg. I was so weak I could barely walk across the floor to the nearest chair. After falling twice in one day, I realized this was no quality of life. My husband took over most of the daily chores including feeding my dogs.

I have always been an active person, not one to sit in a chair all day but this MBC has done me in. I bred German Shepherd show dogs for 30 years and don't have the strength to even groom or walk them.

My onc wants me off the Ibrance for a month then will re evaluate whether to take me off permanently. This was my 4th cycle of Ibrance and Letrizole and my 3rd bout of cancer.

I am wondering and praying if going off the Imbrance with the horrible side affects is worth taking a chance on what life I have left. So discouraged. I thought if you survived 5 years after treatment, you were cancer free. My last episode was 11 years ago and then it reared its ugly head in my breast and rib.

I just want my life back. I dont want Ibrance or Letrizole or the chin hairs. I want the life I had before MBC took it all away.

Patricia

[Barbteeth]

Hello Patricia

Oh I do feel for you

I was so weak 6 months ago on Ibrance that I couldn’t even brush my horse never mind ride him..I love German shepherds and a friend of mine breeds them..they live at the yard where I keep my horses..there’s been two lovely litters this year

I had my dose reduced to 100mg which helped but I was anaemic so take iron folic acid and b12 and my counts have improved so I’m able to ride though do need strong painkillers

As you say it’s the quality of life that’s important and I was so miserable when I couldn’t do anything..I’ve always been an outdoor girl and very fit just like you

My cancer came back after 24 years..I assumed I was cured..such a shock for us when it’s a long time after

I do hope your energy increases and you can get out with your dogs..they will make you feel so much better

Barb xx

[Gram10 in reply to Barbteeth]

Thank you, Barb. I might just have to get off the Ibrance and stay on the Letrizole. I'll see how I feel after being off ibrance for a month.

[Barbteeth in reply to Gram10]

Don’t worry about being off Ibrance for a month as many ladies have to due to low white cells and remember before Ibrance came along we were treated just with letrazole and it worked well..sometimes new drugs are over glorified in my opinion and we’re given them regardless of their effect on our quality of life..

Barb xx

[Have-faith in reply to Barbteeth]

Good point Barb!

[Hidden]

Hi Patricia,

I wish I could reach out and give you a hug. You sound as if you have been suffering so much.

I hope that coming off the Ibrance will make a difference to how you are feeling and that your oncologist can try something else that will not leave you feeling so weak. I agree that it is important for us to have a good quality of life. There are days I wish I could have my old life back too: young, cancer-free and healthy.

Take care,

Sophie x

[Gram10 in reply to Hidden]

Thank you for your support. It really helps.

Patricia

[Hidden in reply to Gram10]

You're welcome, Patricia.

Take care,

Sophie x

[mariootsi]

So sorry you are going through this. I wish you peace and strenghth as you move forward. Love and hugs, Marianne

[Gram10 in reply to mariootsi]

Thank you!

[nstonerocks]

Gram10

It does get very discouraging. Sounds like your Doctor has a reasonable plan to get your labs to a certain level before proceeding with treatment. Not unusual. I hope you take this opportunity to let others pick up the slack, enjoy your dogs and whatever else you love that won’t deplete you. We all want our lives back, it’s hard to move forward with this “new normal.” Sometimes it’s overwhelmingly hard. I wish I could say something wise that would help you feel better and feel stronger. For me it’s a roller coaster of trial and error to negotiate the ups and downs of this disease and treatment. Sending you a hug through the screen and wishing that you recover your energy.

[Gram10 in reply to nstonerocks]

Thank you. Everyone has been so kind and understanding.

Patricia

[PLASEM]

I am so sorry that you couldn’t tolerate Ibrance and Letrozole and you feel so weak, I will be praying for you

[Hidden]

I understand your feelings. We are here so you can share them, even when we may not have an answer. Hugs.

[Gram10 in reply to Hidden]

It does help to share my feelings knowing that I am not alone on the roller coaster ride. Thank you!

Patricia

[Bubbles001]

I hope the month off finds you with more energy and you can find your path forward! Regarding the 5 year gap and being cancer free after that, I read that was not really true for ER + cancers. They can come back or hide out for many years. That is why many doctors are having higher risk women take hormone suppressants for 10 years or longer these days. I believe it is true for triple negative cancer patients who only have surgery and chemo as options. If the chemo works, they probably wont have a recurrence after five years.

[Gram10 in reply to Bubbles001]

Thank you. I didn't realize there was a difference between the types of cancer and reoccurring.

Patricia

[barbarac76]

HI Patricia.

Sorry to hear that the fatigue has hit you hard. I was diagnosed with MBC five years ago before Ibrance was available. I started on Letrozole alone. I had good results...about 1 and a half years with no progression of disease. I've heard other women on this site talk about many years of no progression. I hoping and praying you get the same results.

[Juliandrea in reply to barbarac76]

Hi barbarac, what did they put you on after the letrozole?

[barbarac76 in reply to Juliandrea]

After letrozole, I was on exemestane (another aromatase inhibitor) and Afinitor for about two years. Because I had some side effects with Afinitor, my oncologist played with the dose over the course of two years slowly increasing from 5mg to 7.5mg daily. For example, for about six months after being on 5mg daily for a year, I took 7.5mg every third day and 5mg the other two days.

Now, I have been on faslodex and ibrance for about two years.

[Gram10 in reply to barbarac76]

Thank you for sharing.

[Gram10 in reply to barbarac76]

That sounds very encouraging. Thank you

[sisina in reply to barbarac76]

Hi, pls how many years with MBR are you living?

[barbarac76 in reply to sisina]

5 and 1/2 years. I was diagnosed in August, 2013 with MBC in lymph nodes, lungs, and T9 vertebrae. I just switched to Xeloda (oral chemo) after being on Ibrance/Faslodex for two years.

[Gram10 in reply to sisina]

Since last July

[Klamato]

I feel your pain Patricia! I can't believe how different this pill affect each of us. I take 100 mg of Ibrance and the only effect I've experienced is some tiredness and occasional loose stool. I do not however take Letrizole but instead receive two shots at one time, once a month instead of Letrizole. Perhaps that make a difference. I have been blessed so far and wonder if you ask about the injections instead of the Ibrance combination with Letrizole. I'll get the name and let you know

[Klamato in reply to Klamato]

The injection is Faslodex. Works for me in combination with Ibrance. Good luck going forward. I will say a prayer for you today👍🏻😍❤️

[Have-faith in reply to Klamato]

Hello. I was just put on faslodex with ibrance. How long did it take before you saw results with the faslodex? I have had the first 2 shots and am back for the third in 4 weeks tomorrow as they double it up on the beginning. I feel tired the first 48 hours after the shots. Do you?

[Kimr2081]

I want that life back too. My last bought was also 11 years ago and I thought I was home free. I feel pretty good physically and am still working full time. It’s just I wish it wasn’t what I think about when I wake up. I have so many blessings in my life and a lot to be grateful for. I try to focus on that but some days are just hard!! I hope they get you situated and you start feeling better soon.

Xoxo Kim

[Gram10 in reply to Kimr2081]

I,too,have so many blessings. I just cant believe how fast my life deteriorated over night. Hugs.

Patricia

[Have-faith]

Dear Patricia. I am sorry the meds weakened you so much. A few things to remember: There are different combinations of meds out there now. Your doctor will find something that you can handle. You are strong. You went through cancer before. Try not to be depressed (if possible) because this will physically drain you as well. The combo of the diagnosis and medications is overwhelming and can wear us down.

It isnt easy for any of us so we understand you. Cuddle with your shepards. I grew up with 3 shepards. I loved each one so much. Now I have downsized and have a small 11 pound rescue. Her big personality makes up for her small size. I think pets are very therapeutic...that is for those who like them! Sending positive vibes to you and everyone else dealing with this ickiness.

[BakeryBetty]

I had chin hairs before diagnosis. Okay, pretty much a beard. Still do.

But yes, the fatigue. Oh my gosh. After my last Faslodex and Denosumab injection on the same day, I was wiped out. My hands were too weak to open a jar of peanut butter. It took very little exertion to get out of breath, and I just wanted to sleep. Plus my butt cheeks hurt so much I was limping. My oncologist seemed unconcerned, but I told her I needed a break. This is really, really hard.

[Gram10 in reply to BakeryBetty]

So sorry to hear about your awful experience. I understand exactly how you felt. It was nothing for me to sleep 12 hours straight thru and wake up exhausted with my first few steps to climb.

[BakeryBetty in reply to Gram10]

It is really depressing.

[Gram10 in reply to BakeryBetty]

Yes. Along with the broken threads of my family. Too much to take in I am so weak

[BuoyantCat]

I and all the other women who have replied can definitely relate to the feeling of wanting life to go back to what we had and how we felt before MB. It is also the way I am sure we feel about getting older and losing our youth. I found out that I had MB ten years after my first course of chem and radiation. I think what has helped me the most on the days I feel this way is to stay in the moment so that looking back and looking forward you might miss all the love and things you can still do today. There may be a time when I do have to stay in bed forever but I have made up my mind to thank God for whatever I can do in the present. Focus right in front of yourself and I believe you will find joy in the “small things”. I am praying for you and hoping that tomorrow will be a better day.

[Gram10 in reply to BuoyantCat]

You are so right and put everything in prospective. Thank you!

Patricia