One year diagnosed

[Puppy_love]

I am newly diagnosed with stage 4 metastatic breast ca. I’m on Ibrance and faslodex and it’s been so difficult with working full time and feeling exhausted especially on my week off my cycle. I’ve had 2 infections over my first year but I’m still positive about my disease. I meditate, go to Reiki, accupuncture and take cbd oil. Can anyone share what it’s like for them on their week off Ibrance? Thanks

[nstonerocks]

Your experience is typical for a lot of us. I am almost 5 years in, currently on Ibrance and Faslodex. I have periods of fatigue, and I do nap when I can. I also work full time, and I am 65, not in great shape...I have been able to deal with it until about 2 months ago, I was utterly exhausted. Not an exhaustion I ever felt before. I followed up with my doctor, my wbcs were 1000, the lowest they've ever been, and I felt better the second month, so can only imagine how low they were. Other counts were "normal" (what is "normal" when you are on Ibrance is not usually normal...) My doctor told me to stop the Ibrance for a month, which I did, and I feel much better. just resumed taking it. Have not gone for repeat labs yet. The one thing I slacked off on is juicing. I also slacked off on my supplements which include a multivitamin, chaga mushroom tincture, cbd and recently added some more B12. I feel better when I drink green juice. I don't know if that alone accounts for my slump. As far as my week off, it varies. It is not always worse. I have been on Ibrance about 4 years. I've had some progression in size, but never any "new" lesions (in my lungs). The switch from letrozole to Faslodex in September actually resulted in some shrinkage. You sound like you are doing everything right. Is your job physically demanding? Your commute long? Can you go on disability and focus on staying rested and healthy? This is like a dance, and the tempo often changes. It can get discouraging. Keep doing the great things you are doing. Try juicing greens. Hope this helped. Good luck going forward.

[Red71]

I also am usually more tired on my week off and have a surge in energy when I go back on. I usually nap more on that week. I’m 71 but cannot imagine working full time even if I was younger. Can you cut down to a part time schedule? Elaine

[Puppy_love in reply to Red71]

Thanks Elaine, I’m on salary and if I cut down my hours it will affect my benefit coverage. I guess it’s one day at a time.

[Hidden in reply to Puppy_love]

Don’t forget you have certain legal protections at work. You can ask for reasonable accommodations of your disability like flex time, telecommuting, regular breaks, etc. There is a wonderful website called askjan (Joint Accommodation Network) that suggests numerous accommodations. Contact HR and get the dialogue going. Be proactive and suggest the accommodations that will help you. Good luck.

[Puppy_love in reply to Hidden]

Long story short my boss just thinks I have a chronic disease comparing it to diabetes. I’ve hardly called in sick at my job until recently when I’ve had already 2 infections. Trying to get her to understand the low blood count is quite difficult. I have FMLA papers filled out for intermittent FMLA.

[Hidden in reply to Puppy_love]

I understand why you’re not prepared to share your MBC diagnosis but even with diabetes, the ADA protects you. I have a lot of experience in this area so please allow me to suggest a different approach. FMLA is often the second approach, after you’ve explored reasonable accommodations for your disability. FMLA — which can be taken intermittently or in chunks - requires you to use up your vacation pay after which it’s unpaid leave. The benefit of accommodations is you continue to work and get paid and don’t burn through your vacation pay. Most managers aren’t trained on how to work on this nuance which is why you need to get HR involved. Send an email to your boss with a copy to HR: “as a qualified disabled employee, I am requesting the following reasonable accommodations [insert what you want.]. I want to start a dialogue to make this happen. Please let me know next steps.” HR should respond with some questions and find solutions with you. The employer can’t unilaterally deny the request. They can’t investigate your medical records. They may ask for a doctors note recommending the accommodations to manage your condition. They can’t insist on a second opinion. The ADA requires the employer to work with you to find a solution that still allows you to perform the essential functions of your job — not non-essential functions FYI. The ADA does not require employees to prove low blood counts, etc. Instead, it requires the employer to have a dialogue about the request. It is important to get this request on the record for several reasons. First, it will get you accommodations so you can continue to work but with some relief. Second, as good a person as your manager might be, he/she likely doesn’t understand the process but HR should. Third, it gives you protection from retaliation like a bad review or reprimand or worse. There may come a time when you need to take time off under the FMLA but use the ADA first. They are each unique mechanisms to protect and help employees. Good luck.

[Hidden in reply to Hidden]

PS I say this not from personal experience but as someone with knowledge of employment law.

[Puppy_love in reply to Hidden]

Can you send me again the link? I looked up website but it was referring to family caregivers. Thank you for your input. I truly appreciate it.

[Hidden in reply to Puppy_love]

askjan.org

[Puppy_love in reply to Hidden]

I just filled out on ss.gov application for disability benefits. Would you happen to know if they cover your medications also? Is it Medicaid or Medicare? I’m not 65 so I don’t know how this all works:((((

[Hidden in reply to Puppy_love]

Sorry I don’t know. I encourage you to call Social Security. The representative with whom I spoke was knowledgeable and kind. I was on hold for 30 minutes though so have a book or magazine on standby.

[Puppy_love in reply to Hidden]

Thank you 🙏

[mariootsi]

I find that the way I feel on my 2 weeks off varies. I'm on 3 weeks on 2 weeks off because of low plateletes.

It's a rollercoaster.

Last month I felt terrible for a week then perked up the second week.

Exhaustion is just the way it is.

I'm finding now that it's warmer, that taking walks helps.

This winter was horrible and I was so lazy and depressed.

Back to my wheatgrass powder smoothies and excercising is helping.

[Puppy_love]

Well I don’t drink any smoothies or drinks that everyone talks about. But I’ve never stopped doing some type of exercise. I promised to myself a long time ago I would always exercise until I can’t. Just curious on what other side effects anyone gets from Ibrance and faslodex?

[Home18]

I’ve been on ibrance and letrozole 3 years. I don’t sleep well on my week off, however I don’t sleep well overall any longer. I drink a green juice and a smoothie packed with healthy stuff everyday. I never leave home without a nutribullet 😃

My counts are usually quite good and attribute that to my diet.

I worked full time and am now transitioning out. My last day of work is 6/14 and I can’t tell you how excited I am about it!!!

[Puppy_love]

Oh wow I wish I could transition out but I need my health insurance now more than ever. I am going to try a green drink but is that in place of breakfast?

[Home18 in reply to Puppy_love]

You could still have breakfast but I find between my green juice and smoothie, I’m full and don’t need breakfast.

Luckily my husband has good insurance, I was going to try to stay until the end of the year but I need a break. I wish all of us could retire and just relax, this diagnosis is tough enough!!!

[Nmartinez15 in reply to Puppy_love]

Can you take STD and LTD? while you are in STD and LTD, you can apply for social security. That's what I did. I am stage 4 and SS usually approve really quick if u are stage 3 or 4. I was terminated of my job after my STD ended and I lost my insurance, but i applied for Medicaid and they paid every thing. I am finally got my LTD and in August my social security benefits will start. I have too much stress at work, so I glad I am not working.

[Wildwood123 in reply to Nmartinez15]

Does medicare cover the cost of Ibrance?

[Nmartinez15 in reply to Wildwood123]

I dont know.... I have Medicaid and not Medicare. I have to wait 2 years to get Medicare. Medicaid does paid in full the medication.

[Puppy_love]

Well congratulations!!! When were you diagnosed?

[Home18]

P.s I drink organifi green juice, I get it from amazon. It’s just a scoop a day in water. 😃

[Puppy_love]

Ok thanks

[Nmartinez15]

I am on letrezole and start with Ibrance. I have been taken Ibrance for almost 2 weeks now. I have blood work this Friday. I am extremely tired and my appetite decreased. I am getting headaches almost every day, not sure if the meds are affecting my blood pressure since I never have issues before. I am thankful that I don't work. My former employer terminated while I was on LTD. I am just happy that I don't work, because the radiations and meds consume my life sometimes. I applied for social security and I was approved. I want to focus to get well without been worry about work. I am stage 4 too and I have 4 years old daughter so I need to beat this cancer. I hope you feel better. I also take some natural supplements to help me with my tiredness.

The products call 4life it's for the immune system. And they are great.

[Puppy_love in reply to Nmartinez15]

I also got headaches and loss of appetite but your body will adjust. It takes some months but it’ll get better. But for sure fatigue is a biggie. I make sure I sleep enough and exercise when I can.

[Puppy_love]

I cannot apply for disability unless I’m out of work for one year. I was out only 3 months after my lung robotic surgery. I have Mets to the lung but is stable right now. Ibrance can make you very tired. My cancer came back in my lung after 27 years cancer free. Keep positive if you can it helps. I do a lot of meditation and accupuncture and also Teiki to help be relaxed.

[Nmartinez15 in reply to Puppy_love]

Its only 6 month wait period. And u can collect STD and LTD while you are waiting for social security. I have friend working in SS and if you have stage 3 or 4 they will approve in a few weeks and u just need to apply STD and LTD till the 6 months pass. I did it and now I will start SS on August of this year.

[Hidden in reply to Puppy_love]

I’m not sure where you heard that but Social Security presumes that MBC is a disability covered by what’s known as Compassionate Care Allowance. You get expedited approval of SSDI within a few short months. Google it on SS network. Good luck.

[Nmartinez15 in reply to Hidden]

Yeah that's right! I applied on February and March I rcvd the letter that I was approved but of course we have the wait period of 6 months. I have been getting my STD and LTD for now.

[Scandia68]

Hi I was told that I would feel great during that week as my immune system would be building back up but this has not been the case. I feel tired and achy especially when I get up after sitting for a while. Can you talk to your employer about a reasonable adjustment during that week? Maybe work from home if possible? Or longer hours on the good 3 weeks?

[Puppy_love in reply to Scandia68]

Hmmmm I wish she was that flexible with hours. I’m a supervisor of a breast center. I am in charge of operations and have a lot of responsibility.