I am a new member I just joined today. So glad to have come cross this blog. I welcome you to read my profile it has a lot of my bare bone facts I've shared with you. Can anyone tell me any bad side affects with Fuvelstrant or IBrance? How has your experience been with either?
I also want to share with you my Oncologist mentioned she recently attended a Metastatic Symposium for Cancer treatments. There have been many advances made in treatment that should be coming our way in 1 years time. Very Hopeful for us to know.
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geewisdom
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I'm so sorry for what you've been through since May, but glad you found this site and the amazing women who are on it. I think you'll find the information, inspiration, and hope that you are looking for...
I've been on Fulvestrant (aka Faslodex/Faslo) in combination with Ibrance for 15 months and my cancer is stable. It's important to note that this is my "second-line" treatment, i.e. I was previously on Letrezole + Ibrance for almost four years, but experienced some very minor progression so made the switch. Second-line treatments ON AVERAGE do not last as long as first-line treatments. But there are some notable exceptions, as with everything related to the averages.
I have had virtually no ill-effects from the treatment. Fatigue, basically, and not even that bad, i.e. my prior treatment caused worse fatigue. Since your basis of comparison at this point is chemo, I think/hope you'll find the treatment to be very easy. Do the injections hurt a bit, for a little while? Yes. But it's nothing really...
I'll mention that, like you, I did not experience a huge shrinkage in the original tumor during chemo, which of course is not what we would want, but I've gone on to do very well with subsequent treatments as mentioned above.
But the physical stuff is just part of it, as you note. You are so new to this experience and just coming off some really grueling treatment, so I'm very hopeful that things will get better...maybe even much better. It must be so shocking to be diagnosed de novo (If I read your profile correctly)....I cannot imagine. Taking care of your "whole" self right now might be the highest priority...let the drugs do their work and maybe focus on yourself?
I'm glad to read what you write about upcoming treatments. I've heard the same and even during the time I've been metastatic (about 5 years) numerous new treatments with very good quality of life have been introduced.
A few practical notes...
The most important wisdom that I've gained here is to:
a) try not to change treatments any sooner than you have to...as my doc said early on, "ride each pony as long as she'll go". Sometimes patients are too eager to change and other times it's the docs -- another way to say this is to keep informed, keep an open mind, and advocate for yourself.
b) Try not to stress too much about every lab report, scan, etc. "Says easy, does hard", as they say in Texas! But try to focus on the long game, not every little twist and turn...BUT, do try to understand everything you can what it all means. I've worked for years to understand MY cancer (many don't like the possessive on this, which I get, but I emphasize that MY cancer is unique...In my mind/imagination it likes some things, shrieks in pain from others (at least that's the way I picture it!)...so I try to do more of the latter, less of the former.
c) Focus on taking care of yourself, e.g. don't short shrift your need to rest, take days off, etc. Since you're working, your company has a legal obligation to accommodate your needs since technically you are disabled. You qualify for social security disability, for example, and possibly for company provided disability as well. If you have any questions about this specifically, feel free to ask them here to get everyone's input or direct message me since I've gained a lot of insight through personal experience and numerous discussions with attorneys. This having been said, there's a good chance that you'll feel quite well and will be able to carry on as normal for some time.
There's more, lots to learn, but this site is a great part of doing that. We are a small group compared to some of the larger sites/resources and so the camraderie (sp?) is incredibly helpful through the lows and highs.
Be well, take care.... Lynn
p.s. I realize this is probably unimportant at this moment but I just have to comment that your images, e.g. icon, profile, are just beautiful and peaceful.
in reply to
gee wisdom - One more comment...I recognize that this might be difficult, but within the scheme of MBC, you are in a good starting position. Hormone receptive (there are so many available treatments, many fairly easy to tolerate) and bone only (if I read your profile correctly). Both of these facts bode well for you...Take care.
Huge HUG to you, your response is so encouraging, inspiring, uplifting and so very informative. I will keep a positive approach as I move forward with my new treatment plan, my first shot of Fuvelstrant is next Wednesday 12/18/2019. This site has been a God send to me and I am enjoying the camaraderie that I feel here, I feel at home. I will continue to share my experiences and gain from others here as well. It's such a huge relief to talk it out and share your woes and victories with others like me. I tell you there were days that the fatigue with chemo was unforgiving but I pushed on, just making it up a flight of steps was challenging. This is encouraging to hear that since I've already been through my low and highs with chemo, my new treatment plan may not be that bad. I also know that with treatment that everyone is different so I will march forward and hope for the best. Thank you for your practical notes which I took deeply to heart. I have learned the hard way to now focus on myself and that's exactly what I will continue to do. I now will get to love myself even more and lend focus on me and my needs.
Yes, I will discuss the option to fall back on disability with my oncologist next week if I need too as I would imagine she will have to complete my paperwork for my employer. I would also appreciate if you could share any knowledge that you have concerning company provided disability. I'd like to know more about this in case I should also need to take some time out from work. Some questions off the top of my head would be:
1. Is the company provided disability separate of FMLA
2. What is a company provided disability
3. How am I entitled to this benefit is is just simply on the basis of MBC?
4. Would I be eligible for Social Security disability and Medicare (I worry about medical coverage)
Lynn,
Thank you so much and let's continue to stay connected.
I don't know about too much about FMLA but I do know that an employer with less than 50 employees does not have to offer it. (Taken from site): "Now for the bad news: "
"The family and medical leave, if you qualify, is unpaid, unless your employer or state plan is more generous than the federal law requires. (See "How to Negotiate with a Small Employer" and "Check Out Your State Laws," below. And your boss is entitled to require that you take your vacation, sick and personal time while on FMLA leave. You are also entitled to choose this option. The benefit to using your FMLA concurrently with any paid time off you may have, is that you are getting paid and your job, and health insurance, are protected. "
If you have stage iv, you are automatically qualified to get approved for SSDI. You CANNOT be working when applying. You still have to apply but you will need to apply under the COMPASSIONATE ACT, which means instead of waiting several weeks/month for a decision, they will review your case quickly (usually within two weeks) but even after approval, you will have a full SIX MONTHS of UNPAID SSDI. Don't know why by that is the govt. for you. So be prepared to have six months of money to pay your bills before your SSDI starts.
You are NOT eligible for Medicare until you are on SSDI for two full years. That is a problem for most of getting insurance (unless you are below poverty level). Check to see if your state has the special medicaid for stage iv breast cancer, pancreatic and ovarian cancer.
Your best bet to get the most up to date information is by speaking with your social worker at your cancer center or calling a patient advocacy group.
I know many women who are getting treatment for stage iv and still continue to work at their jobs full-time bc of the health insurance. Obviously, they did not file nor are they getting SSDI. Others cannot continue to work for physical reasons, like myself, but then you lose your work insurance.
Very helpful and informative. Great idea, I will definitely sit down with the social worker a my Oncologist office to help sought this out. as a just in case measure. I will also look into the other items you mentioned. So good to know about options.
Hi Gee...I hope you're doing well...I'll add a bit more info to the great response from aamkearns...
re: Company disability, this is typically provided for employees of big companies, public sector, unions, etc. If you do an annual enrollment for benefits, you would likely have seen this option on the form. About half of US workers get healthcare through their employers and I would imagine only a subset get disability. If you have this, let me know, and I'll share what I learned about this in my own process.
I assume you do not qualify for Medicare based on your age...
Obamacare/ACA might be an option for you until you qualify for Medicare. It can be relatively inexpensive, i.e. it is subsidized based on income and -- for now -- pre-existing conditions are allowed. But please do your research since the coverages vary greatly by state. "Blue" states tend to be better than "red" states, e.g. Texas offers only poor coverages, including some new fangled "Oscar" insurance that is almost a scam, and is offered by a company owned by Jared Kushner's brother.
It all gets very complicated so you are wise to talk to a social worker and do lots of research. Ideally you can plan ahead and possibly make some moves now/soon that will put you in the best position later (e.g. shedding assets for medicare, considering moving to another state for better benefits, saving money, etc.).
You have access to many experts here who have experiences probably every possible scenario so, again, glad you joined the group!
Be well,
Lynn
in reply to
FMLA is separate from SSDI. FMLA assumes you will continue to work. It offers 12 weeks of paid or unpaid leave — depending on your employee policy. Most employers require you to use up your paid vacation first and then you use the balance of leave as unpaid. It is important to know that you can use the 12 weeks in its entirety or intermittently as your needs arise. For example, if you just need a day or two off periodically for chemo, you can take incremental time. You’re not required to use all 12 weeks at once. To be eligible for FMLA you must have worked a certain number of hours per work for an employer with 50 or more employees within your geographical location.
By the way once you return from FMLA, the employer’s duties don’t end there. You can ask for reasonable accommodations to do your job like flex time, modified work schedules. That’s because MBC is a protected condition under the ADA. ADA provides separate benefits and protections than FMLA
Hi Geewisdom: We have had very similar medical paths except I had a 2.5 year break after “surviving” stage III in 2016 to be diagnosed with Stage IV MBC in the left pelvis 4/2019. I’m on Faslodex (monthly shots), Xgeva (quarterly shots) & IBrance pills for 8 months now. The first 4 months were the hardest for me. I also am a strong Christian. God has helped me every step of the way. I feel mostly good each day but I battle fatigue and other minor side effects. I stoped working & went on SSDI in April 2019.
I take quite a few supplements & Fenbendazole as well.
I worked during my Stage III treatment (Masectomy, 15 chemos & 25 radiations). However, when I got to stage IV I decided I needed to stop & take care of myself.
I am way too tired to handle a full time job. Otherwise, I feel good & live a relatively normal life.
Hi, I take Ibrance and Letrozole and have had very good results. I also meditate, fast for about 15 hours every evening. I only eat between 9 a.m and 3 or 4 pm. The rest of the time I drink water or herbal tea. I do yoga and I spend time on my Wave Mat. It is filled with semi precious crystals that give off negative ions. And I also drink quite a few smoothies. And I try to drink at least one cup of miso broth each day. Miso can also be spread on crackers. I don't eat dairy. Occasionally, I will have an egg if it is baked into something like a muffin. I do eat some sea food but very very little meat. I am trying to reduce sugar intake and that is the hardest. But the good news is that on the above drugs and following my own plan as I mention above my tumors are shrinking. Remember to meditate and think and believe you are healing. All the best for a happy holiday season. I hope that everyone of the wonderful ladies that you and I meet on this blog get well and I hope we are all going to be here for our family and friends for a long long time.
Awesome. I have also changed my diet and I believe in mushroom for my healing as well. Doing that with a combo of herbs. I am thankful to all of what I've learned from everyone since I joined this site.
Thanks Viennagirl. I’m also doing the plant based diet. And, the meditative mind is an important way to move through the MBC. It’s so important to have less stress and less sugar (lol) with MBC. Have a great day.
Just finished 4th round Ibrance -first 2 at 125mg then dropped to 100mg due to very low neutrophil/wbc. I usually have to stop by day 15 or so due to neutropenia then take 2-3 weeks off before next cycle. Have a rash that is very itchy which comes and goes on different parts of my body including my hand and the first round had a very bad cold sore on my lip. Just had 7th shot of Faslodex- tried heat pack the first few times but for me ice pack on the injection site right away works better to limit swelling. This summer I turned 65, retired from my job of 30 years and started metastatic treatment all in the same month! It’s been a crazy year. First diagnosed in 1994, second reoccurrence in 2009 and now in 2019 metastatic with spread to lungs. I took Letrozole for past 10 years so my doctor paired Ibrance with Faslodex. Overall I feel pretty good - appetite, energy level, sleeping well, do Pilates reformer classes for flexibility, strength... hope to remain this way as long as possible. And most important prayer - I feel closer to God then ever before. I have a magnet which says “let your faith be bigger than your fear”. Good luck and blessings to you🙏
What a roller coaster ride for you but God is in the front seat..Oh Thank You Jesus. Appreciate your sharing and everyone's story gives me HOPE. Very comforting and I am empowered by faith.
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