Recently diagnosed w/mets to bones...

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Katrose
Katrose Member Posts: 51
edited August 2020 in Just Diagnosed With a Recurrence or Metastasis

My breast cancer journey started in November of 2009, when I was diagnosed with Stage IIIB invasive lobular carcinoma of my LT breast. Like many of you, I obtained preventative screening mammograms every year from an early age and then transitioned to mammogram and ultrasound during the last 5 years prior to diagnosis. My cancer didn't present as a lump or mass, my LT breast just became very firm and I was told that I had fibrocystic breasts. However, since the RT breast didn't have the same appearance, I questioned this with my OB/GYN who sent me to a breast surgeon. My 1st biopsy came back negative, it wasn't until 3 months later that the 2nd biopsy showed cancer. MRI showed the tumor to be 7 cm in size; therefore, I was given chemo to shrink the tumor prior to mastectomy. However, following mastectomy, my tumor had not shrunk in size and 9 of 18 lymph nodes were positive. Following which I had radiation, hormonal therapy, and reconstruction.

At the time of my diagnosis, I had just returned to college at the age of 51, since I was looking to make a career move. In addition, I carried the health insurance for my family. Against the advice of my oncologist and others, I continued to work full-time and go to school part-time during my treatment, which was the best thing for me since it kept my mind off the "what ifs." I've been in school since then, on a part time basis, and just recently achieved a bachelor's degree in Health Information Management. For me, being in school and working served as a great distraction and kept me moving toward my goals. It also helped me serve as a role-model to my daughters who were both attending college during that time. I was determined not to let my cancer diagnosis define me.

Now, 10+ years later, a few days following graduation, I've have been diagnosed with Stage IV disease, which was caught early as my oncologist had been running a CA 27-29 test since diagnosis and it started to increase last April 2019 from 44 (s/b 38 or lower) to 196.4 in January 2020. My first PET came back negative; however, the second PET done in June 2020 showed mets to my RT 2nd and 12th ribs and T10 & L2. My original tumor markers were ER+, PR+, HER2-, but have changed following chemo to ER+, PR-, HER2-, so, I've been placed on Ibrance and letrozole. However, after 28 days on Ibrance, my WBC dropped to 0.9, so Ibrance has been held. Last week, my WBC was 2.4, so I've been off Ibrance for approximately 2 weeks now, but I'm still taking the letrozole. I also had my first Xgeva injection last week.

I feel very fortunate to have had 10+ cancer-free years and I'm hoping the new treatment regimen works so that I can enjoy many more years and see my two daughters get married and have children, travel, etc. I'm a very positive person and I believe in living each day to its fullness and my hope for joining this forum is to be able to connect with others who to share our joys, concerns, treatment tips, etc.

Wishing everyone hope and happiness!

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited July 2020
    Hi Katrose, thank you for sharing your story. I am sure other ladies will come along and respond in time, but since weekends are slow, I thought I would mention that there are some threads you may want to check out, such as the bone mets, Ibrance, and letrozole ones. It sounds like you are a positive go getter and will not let this diagnosis stop you. You are a great example for your daughters, and I wish you well.
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  • Katrose
    Katrose Member Posts: 51
    edited July 2020

    Hi Peregrinelady,

    Thanks so much for your reply, thread suggestions, and kind words! This is my first time joining an on-line group and wasn't sure where to start. Since I work full-time, I don't have a lot of time to spend searching for information, so thanks again for pointing me in the right direction.

    I'm wondering if anyone else started on Ibrance and then had to take a 2-week break and if so, did they do well on the 2nd 28-day dose or did the dosage have to be reduce?

    I wish you well also! Thanks again for reaching out to me!

    Katrose

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited July 2020

    I’ve been on ibrance/letrozole for about a year. No major se. My counts always run lowish, MO says he’s not concerned. He did give me an extra week off in June. It’s common with this combo. We start on 125, and go from there. You may get dropped to 100, or even 75. It’s normal for this med, nothing to freak out about.

    Come on over to the ibrance thread!!

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  • Snow-drop
    Snow-drop Member Posts: 514
    edited July 2020

    Hi Catrose, your story is inspirational thanks for sharing.

    I am a de novo MBC on ibrance/ letrozole combo, and xgeva for bone Mets. My oncologist recently reduced dosage of ibrance from 125 to 100 with additional days off, I still can get benefits of lower dosage. Don’t worry about blood work, it is common for whoever takes ibrance. Come join Ibrance(palbociclib) and Bon Mets Threads, there are many supportive ladies there that can answer to all your questions.

    I was not really into any online forums either until I found this forum. There is always ones to give an answer.

    Best wishes


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  • Katrose
    Katrose Member Posts: 51
    edited July 2020

    Hi Spookiesmom,

    Thanks so much for helping me understand the ups and downs of Ibrance ~ I really appreciate it!

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  • Katrose
    Katrose Member Posts: 51
    edited July 2020

    Hi I-beat-it,

    Thanks for your kind words! Thanks to you and Spookiesmom, I now realize that Ibrance can be variable with regard to the dosage and time off. That's good to know, because its so different than past treatment modalities, like chemo where they don't want you to miss a dose or hormonal therapy, which requires you to take it daily. I'm very thankful to you both for helping me feel better about my treatment plan. Also, thanks for your thread suggestions.

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  • wallycat
    wallycat Member Posts: 3,227
    edited July 2020

    Wishing you well. You sound like you are in a good place, which can be rare in these situations. My DH was dx with metastatic prostate cancer and put on antihormonals (for testosterone) and the xgeva (his is also mets to bone). He's one year out and doing well. His lymphocyte count has dropped a lot but so far, our oncologist (we share) hasn't suggested anything different.

    Best to you!

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  • cyathea
    cyathea Member Posts: 338
    edited July 2020

    Hi Katrose, thanks for sharing! I loved hearing what you accomplished while having BC. You should be very proud. You inspire me.I’m happy you have had so many cancer free years, but sad you having to join us now.

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  • Katrose
    Katrose Member Posts: 51
    edited July 2020

    Hi AMariaV38,

    Thanks so much for sharing your story with me! I definitely agree with you about the bone biopsy results. My MO told me that the decalcification process does hinder the results somewhat, so I'm sure she will be watching me closely. I actually have two MO's due to my insurance, my primary oncologist has been with me since 2009 and a second oncologist had to be utilized since I needed to stay within the first network tier to get my meds, blood work, injections, etc. paid at 100% by my insurance carrier. My primary oncologist is calling the shots and the second oncologist is carrying out her orders, at least that's the way its suppose to work. Anyway, I feel very fortunate to have two oncologists looking out for me.

    I so sorry you had to go through all that unnecessary treatment, before realizing the HER2 was reported incorrectly, but glad you doing well and your markers are normal and your disease is stable.

    Thanks so much for your advice!

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  • Katrose
    Katrose Member Posts: 51
    edited July 2020

    Hi Cyathea,

    Thanks so much for your reply and kind words! I see that you live in PA; your practically my neighbor...LOL. I hope your doing well and enjoying the summer!


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  • Katrose
    Katrose Member Posts: 51
    edited July 2020

    Hi Wallycat,

    Thanks so much for your reply! Sorry to hear that your DH's lymphocyte count has dropped a lot. I see that he is on Xgeva too. I had a weird thing happen to me following the Xgeva shot and I'm wondering if anyone else had this same side effect? Four days after I received my 1st Xgeva shot, my RT arm felt weak and a bit tingly. Then that evening after going to bed, I got a severe backache, for which I took Ibuprofen, but it did nothing for the pain, which was unusual as it always helps. Needless to say, I was up most of the night. The next day the backache was still there, but not as severe and disappeared as the day went on. I was wondering if it could have been a reaction to Xgeva? Has this every happened to your DH?

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  • wallycat
    wallycat Member Posts: 3,227
    edited July 2020

    My DH said his only complaint is if they don't warm up the medicine first; then it burns when injected. Otherwise, he's not had any other complaints about it.

    They alternate sides for his injection site on his belly, but i'm sure they are doing that with everyone.

    Make sure you mention it to your provider.


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2020

    When I was getting Xgeva (paused since March due to Covid, but will probably restart soon) they would hand me the tiny little bottle to warm up in my hands first while the nurses did the rest of the stuff they do to get injections ready. Without fail I would have back pain / general fatigue for a good 24 hours after that injection. It wasn't awful, nothing that some Advil couldn't handle, but noticeable and sometimes my legs felt wobbly. They've shot it in both the arm and the belly, frankly I prefer the arm since belly gets the big needle!

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  • Katrose
    Katrose Member Posts: 51
    edited August 2020

    Hi Wallycat,

    I've only had one Xgeva shot so far and it didn't burn and was in my RT arm (can't have it in my LT arm due to axillary LN dissection). It didn't burn and was surprisingly painless. However, the medication had to be prepared by the pharmacy, because there was an issue with my dentist not wanting to give clearance (his sister didn't do well on Xgeva). So its possibly that it warmed up in the prep stage. I'd definitely mention that next month. Also, I didn't know they gave it in the belly, hope my arm holds up...LOL

    Take care!

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  • Katrose
    Katrose Member Posts: 51
    edited August 2020

    Hi SondraF,

    Thanks so much for your reply! Wallycat mentioned warming Xgeva also, so I'll definitely mention that next time I get it. I spoke to my oncologist yesterday and he said that he has had a few patient's complain about back pain after Xgeva and said its seems to be a valid symptom, since the medication probably causes an inflammatory response since it promotes bone building/strengthening. I'll be ready next time, I'll take Ibuprofen/Advil at the first sign of back pain. I, like you, would rather have the Xgeva in my arm, I really don't want a belly injection. What is the "big" needle you get in your belly? You don't have fulvestrant (Faslodex) listed in your treatment - are you on that now? I thought Faslodex was given in the butt?

    Take care!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2020

    Hi there,

    Its the Zoladex/goserelin injection. I still can't watch a needle going into me, but it makes a distinct click when the pellet is delivered under the skin. Its for ovarian suppresion, so most all of us ER+ pre-menopausal ladies get to enjoy it monthly. The nurses always comment, if they haven't done it before, how large the needle is but I have never actually seen it! :) Frankly I'd be just fine getting the oophrectomy so I don't have to mess around with the injection anymore, but since I have to do bloods monthly anyway, I get that all done at the same time.

    Regarding Xgeva, I've noticed that I ache more in places where I have had injuries in the past like the degenerative areas of my lower back. So maybe something to watch out for, but overall a few Advil really sorts it out and it passes in a few hours. The first few times I felt really funky but got used to it. Oh - and I had to have a dental check up before I started, and I have a check up every 6 months just to catch anything early.

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  • Katrose
    Katrose Member Posts: 51
    edited August 2020

    Hi SondraF,

    The Zoladex injection doesn't sound very pleasant, so sorry you have to go through that. I don't like to watch them take blood or give me an injection either! I'll definite take your advice about taking Advil before the pain gets too bad next time. As you mentioned, I did have to have a dental checkup prior to starting Xgeva and will also be followed by my dentist every 6 months.

    Thanks again for all the great info! I really appreciate it!

    Take care!

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2020

    Sorry you're dealing with this, but so glad that your oncologist has been so on top of things!

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  • Katrose
    Katrose Member Posts: 51
    edited August 2020

    Hi Kbeee,

    Thanks so much! Wishing you the best also!


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