I am a rare case for Johns Hopkins. Dx de novo ER/Pr +, Her2 - almost 8 years ago. Two very tiny liver mets only. Did extremely well and achieved NED status on Ibrance and AI for 6.5 years when we noticed the primary site of cancer in the breast was growing. Switched to Faslodex and Fulvestrant. That course did not work for me at all. Rest of body, free and clear and still free and clear. Medical team determined that I was a good candidate to receive a mastectomy which I did on 2/10. Radiation up next for 6 weeks. Pathology reported a tiny amount of cancer found in 1 lymphnode and a tiny amount in posterior margin. Still Er+, not as strong, very weak Pr+, and now considered Her2 low. Onc stated Xeloda is next and Herceptin after when that fails. I am 44 in a couple weeks, single and still working because I need the great insurance. Quality of life has been great and have been able to lead a pretty normal life. I am concerned about whether or not it is time to let working go and if I will be able to now do the things I love- travel and exercise. Any tips or words of encouragement?
Starting Xeloda soon: I am a rare case... - SHARE Metastatic ...
Starting Xeloda soon
Hi Meena, what a fascinating story. Very unusual. I have sat in many breast Tumor boards and that is unusual. And you would have been so young when you started this journey. I was 44 at original dx but that was 19 years ago.
I am sure you are aware that 2 years after MBC presentation you csn start on Medicare and SSDI… and that they will calculate your payment as if you are 67 so you won’t be penalised for not working up until then. So that is a pretty sweet deal. I do think you can apply only after stop working for 6 months and it prob won’t be as much as you make full time. But with out work snd commute you can cut down on some costs… you could down size and then you could travel volunteer do alot of things… but do give it some thought as you are likely to live a long time relative to some of us on this site… but you can still make money I think.. so you could do something small like walk dogs or other active thing… or go house sit all around the world… ok I just talked myself into doing this new chapter. Anyway have fun exploring all the possibilities l!
Hi Meehan, When I had reoccurrence at 62 I went on long term disability at work until I was 65. My work had me sign up for SSDI at 62. The company that handled the disability insurance for my employer deducted the SSDI amount from my work disability. You can't double dip. When I turned 65 it automatically switched to Social Security. When you go on Medicare research your Medicare supplement insurance thoroughly. Since you have a pre-existing condition you will go to underwriting if you try to switch your Medicare supplement later. A pre-existing condition results in a higher premium. You have the one time when you go from your employer's health insurance to Medicare and a supplement that the pre-existing doesn't go to underwriting. I had more energy to do the things I loved after I went on disability. I struggled before and was not enjoying life. I could not find the work life balance. I was exhausted all the time. I am 72 now and when I look back I am glad my employer had disability insurance. If my employer did not have disability insurance I would have taken only SSDI. Find an insurance broker that handles Medicare supplements for many different insurance companies not just one company. They don't tell you they make more off of selling advantage plans.
Good luck on your decision.
Kay
Hi Meeya, I’m sorry to hear this has affected you at such a young age … but great that you were able to be NED for 6.5 years. I hope your recovery from surgery & radiation will go well, it will probably feel like a big milestone to get through that and start a new chapter.
I powered through my first breast cancer working almost full time throughout treatment (chemo / surgery / radiation for stage 3B). When it returned 5+ yrs later as metastatic I continued working full-time for 1.5 years which I found really difficult in terms of both energy level and emotional well-being (toxic workplace). I left and am now doing part-time consulting from home which feels much more sustainable (and Covid-safe). I also love that it’s flexible and has allowed me to transition into a new chapter where work is a much lower priority. I’m still on COBRA with my previous employee health insurance and scoping out what to switch to when that ends. I’m 55 now (+ on Xeloda which is going well) and like you want to enjoy life while I’m feeling relatively normal … while also conserving energy and taking care of my health.
It sounds like you have some options (continue working, shift to part time or retire; self-pay or SSDI/Medicare) and can take time to explore them. Would you be able to retain your health insurance if you went part-time at your job?
Wishing you the best …🌷
Thanks so much for your response. I work for the school system, so no.. I won’t be able to retain my insurance past 60 days I believe. I am in a supervisory role that is only offered full time.
How are your side effects with Xeloda?
Hi there, for me the Xeloda side effects have been manageable. I feel much better in terms of energy level & mood than I did on Ibrance (though that may be situational - hard to tell). I’ve had some minor foot issues (pain/skin peeling during week 2) that have been addressed through adjusting the dosage and timing. In my first 3 months on Xeloda there was a significant reduction in my liver mets … fingers crossed it stays on this positive path as long as possible!
The Hand Foot Syndrome is what kinda scares me the most… does/did it limit you from activities? I love walking and I read where you shouldn’t take long walks
it really varies how each person reacts. In my case, I was getting foot pain in week 2 of the 3-week cycle. We adjusted the dose and shifted the timing to 1 week on / 1 week off and voila, no more foot pain and no probs walking (though I’m not pushing my luck by doing long hikes…). Biking & rollerblading are good low-foot-impact options for being outdoors, and I use an indoor stationary bike for aerobic exercise 
I say go for it - if you can really afford it and keep the great insurance. Be very careful about money - l think you are a lucky one an live a long time. So happy for you that you are thriving. 🌺 Mary
Hello Meeya, I was 36 years old too when I was diagnosed de novo. I am sorry you have to start a new line of treatment but it's great you got 6.5 years of Ibrance. I was on Ibrance for 18 months and it was really tough, maybe because my neutrophils were always very low. Also, I had very often mouth sores. For me the Xeloda side effects were manageable. I was on Xeloda for a year and as LDR1 I felt much better in terms of energy level & mood than I did on Ibrance/Letrozole . I had some major HFS the first 2 months but then I got my dosage lowered and an extra week off meds and it did help. After that I was able to resume my activities except for knitting. I was in a dark place when I started Xeloda (swollen liver and a lot of pain) and on Xeloda there was a significant reduction in my liver mets. I wish you best of luck with Xeloda. Helen
So sorry you are dealing with a treatment change. One question though: HER2 low is not the same as HER2 positive. Herceptin is only used for HER2 positive patients. A drug called Enhertu can be used for HER2 low. You may want to question your oncologist and seek a second opinion about Herceptin if you are not HER2 positive. Good wishes.
It’s weird… my fish testing on Her2 came back barely negative… so my Onc is considering me Her2 low. Herceptin will be the next course of treatment if Xeloda fails.
Although HER2 Low is not an official subtype, many patients who are Hormone Receptor Positive, HER2 Negative and many patients who are Triple Negative have cancer with a low level of HER2 expression, defined as IHC value +1 or +2 and negative for HER2 gene amplification by in situ hybridization (ISH). Whereas these levels of HER2 are still considered to be HER2 negative, they fall within the HER2 low category. Notably, the drug Enhertu has been FDA-approved for MBC patients with HER2 low expression who have received a prior chemotherapy in the metastatic setting or developed disease recurrence during or within six months of completing adjuvant chemotherapy.
Please note:
HERCEPTIN IS NOT APPROVED FOR HER2 LOW MBC - only for HER2 POSITIVE MBC.
Totally mixed up meds… It’s Enhertu not Herceptin. My oops. You are absolutely correct.
Enhertu can be a highly effective drug, and I hope that if you ever need to take it, you'll respond well!
HER2 positive treatment recommendation
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