Visiting Hiatusville for Three Months

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Tina2
Tina2 Member Posts: 2,943
edited August 2019 in Stage IV/Metastatic Breast Cancer ONLY

All,

Many of you know me as an old-timer on the the Stage IV Forum and a long-time member of the Fasodex Fanny Pack.

I just returned from a two-week trip to Athens and a couple of islands in Greece. The experience was surprisingly arduous--not simply because of the heat. While I loved the scenery, the museums, the sites, the sounds, the food and the people, I became more aware than ever of the limitations that age, weight and arthritis have placed on my ability to climb, walk and even stand.

I appreciate that Faslodex, the sole treatment I've been on since 2011, quickly stopped my lung mets in their tracks and rendered them metabolically inactive. However, I also believe that Faslodex has contributed to my increasing motor issues through both blocking estrogen uptake and the constant injury of the monthly injections. When I've mentioned this to my oncologist over the years he has not disagreed.

On our trip, my spouse saw how I struggled to keep up. (I did manage through sheer bullheadedness to climb the Acropolis, but I really thought I might die. I was staggering like Frankenstein's monster on the descent.) She agreed to my asking my oncologist if I could take a break from treatment. When I saw him yesterday, I mentioned my difficulty in Greece, reminded him that I had been on Faslodex for seven years, and asked him point blank if I could could take a hiatus.

He said "yes" without hesitating, then added "Let's say three months." After letting me register pleased surprise, he said he was sure the cancer was still lurking in my body and that I would have to carefully monitored with scans, the first occurring in three months. He also gently suggested that I was aging and prone to advancing issues in that regard , something he reminds me of often. (Perhaps this is because he is as well.) He asked me to keep a record of how I felt every 30 days and not look back at the previous notes.

We discussed what would happen in a worst-case scenario: scan shows cancer flaring up in lungs again/progression and I go on Faslodex plus something or a completely different regimen. We did not discuss a best-case scenario, which to me would be that I would feel so great in three months that we could extend the break! In trying to second-guess this enigmatic but very intelligent and informed man, I would think that there are just a few possible outcomes: scan shows a problem, so I return to treatment. Scan shows no new problem, so I eke out more break time. Scan shows no new problem but he convinces me to be cautious and return to treatment.

My spouse believes my doctor would never have so readily agreed to my request for a break if he did not have data that backs up his decision. I am inclined to agree.

I apologize for the long post, but this is news I have no intention of sharing with anyone but my partner and my fellow Stage IV sisters and brothers. In closing, I will add that I felt almost giddy leaving my oncologist's office for the first time in seven years with an unpunctured gluteus maximus. And I feel lighter knowing that I need not feel like a cancer patient for at least three months!

Tina

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited October 2018

    Tina, I know this decision is one that you, your spouse, and your oncologist made only after a great deal of soul searching and careful thought. I can only imagine how freeing it must feel to know you will have no needles thrust into your backside and no related accompanying side effects for three full months. I am smiling at the thought of your hiatus. Sometimes our bodies really do need a break. My hope for you, of course, is that you continue to show no progression throughout your break.

    I hope you continue to post during this upcoming hiatus to let us know how you are feeling. I hope you find some new energy and strength. You remain in my heart and prayers.

    Hugs and prayers, Lynne


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  • Tina2
    Tina2 Member Posts: 2,943
    edited October 2018

    Thank you, Lynne! Don't worry. I'll be checking into this Forum regularly. I'm too curious about how everyone's doing to stay away!

    Tina


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  • illimae
    illimae Member Posts: 5,710
    edited October 2018

    Yay, what a great opportunity, so happy for you. Please do update us on how you’re feeling 🙂

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2018

    Tina,

    I don't know if I am more jealous that you had a two-week trip to Greece or you will get three months, treatment-free! I hope your body finds a way to begin healing; though three months vs seven years will be your own body's Acropolis. [Never mind, I know which one makes me more jealous!]

    *susan*

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited October 2018

    Yippee! That's wonderful news. Enjoy every day!

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  • pajim
    pajim Member Posts: 2,785
    edited October 2018

    Tina, an opportunity for you to heal up! That's wonderful. I hope you find that you really do move (and feel) better. And that in 3 months all is still well.

    I want to know about Greece!! It's on my list of places to go but I haven't planned anything. Was it really great?

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited October 2018

    Tina, when I read the title of your post, I thought you were going to take a break from the forum. No, wait...honestly, my first thought was, “I wonder where that city is?”

    I hope the hiatus from Faslodex goes well for you. Nice that the onc agreed so readily. In June, I requested to go from an every 3 month zometa bone strengthener iv to every 6 months (after 7 years of it), and had to convince the reluctant onc to see things my way. And zometa isn’t even officially what’s keeping the bc stable, as I take Arimidex daily and that’s what’s suppressing the estrogen.

    Best wishes to you

    !

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited October 2018

    Tina, Hiatusville is a wonderful place! I have never done 3 months though. I did almost yearly month-long breaks from Femara due to side effects. I mostly announced the break to my onc after the fact as I didn't want to take no for an answer. This is a short break as you barely have the thing out of your system and then you would have to start again. He did once tell me that there was a trial he would have put me on if I weren't metastatic, called the SOLE trial (Study on Letrozole Extension) which included 3 month breaks after 5 years of continuous letrozole. For Tamoxifen, my onc warned me beforehand not to take breaks. I understand why now when he reduced my dose by half and I had withdrawal symptoms (menopause revisited).

    Do lots of healing and fun stuff to take full advantage.

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  • SusanR
    SusanR Member Posts: 598
    edited October 2018

    So happy for you Tina, both for the trip and also for the break.  I just came off of a 3 month hiatus from chemo and let me tell you, it was wonderful!  I had so much energy and felt so much like my "old self".  I'm an old Fasloldex gal myself,  I had 5 years of the injections and then stopped because of bone progression.  I've been of the shots for 2 years now and the areas of injections remain lumpy and sore but it's worth it because of the long run I got from it.  

    Please enjoy every moment of this break, and try not to look ahead too much!!  Best of luck to you!

    Susanr

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited October 2018

    Tina.... it has been just over two weeks, meaning your last shot was six weeks ago. Are you feeling any less achey? Any improvement in the joints? Willing to share an update? *susan*

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  • Tina2
    Tina2 Member Posts: 2,943
    edited October 2018

    Susan,

    My lower back and rear end are much less sore and tender than when I was getting regular injections. My ankles are no longer swollen, but that is probably due to the change of weather and that I'm no longer on my feet all day, pushing my body through heat and up hills.

    That's it so far.

    Tina



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  • Tina2
    Tina2 Member Posts: 2,943
    edited November 2018

    Update from Hiatusville:

    Here I am, tootling through another month un-punctured! Frankly, there isn't much physical change I can attribute to the lack of Faslodex. Arthritis continues to progress, newly notable in my wrists and fingers. My right thumb looks like the Elephant Man.

    Scans are scheduled for the first week of January. It's been great having a break from that world and I dread returning to it.

    Wishing you a peaceful holiday season,

    Tina





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  • jobur
    jobur Member Posts: 726
    edited November 2018

    Hi Tina! Thanks for the update, I've been wondering how you are doing. Hope your hinder is enjoying the break even if you haven't noticed much other physical improvement. I always have this wishful thought in the back of my head that maybe, just maybe, a tiny percentage of MBC patients are "cured" (cancer in long term remission) and might not need treatment for the rest of their lives. 

    I am so happy for you and your partner's trip to Greece and very proud of you for climbing to the top of the Acropolis. The little engine that could!

    Have a lovely holiday season and try to put off any scanxiety you may have until next year.

    Jo

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  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2019

    Yo, here I am. Scans tomorrow. Treatment of some kind starts up again next week unless...

    My hiatus experiment was short, but seems to have proved that my joint etc. pain has little to do with Faslodex, or simply that the effect of seven years of injections can't be diminished in three months. Whichever, I'll let you know what's up when I know.

    Thanks for coming along.

    Tina

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  • jobur
    jobur Member Posts: 726
    edited January 2019

    Tina, Hope you get your usual good news from scan. Sorry your short hiatus from tx has not given you more of a vacay from joint pain, etc. 

    Jo

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  • pajim
    pajim Member Posts: 2,785
    edited January 2019

    Happy scanning Tina! If your joint pain hasn't gotten any worse, then maybe it's really not related and lo, maybe the cancer is just fine!

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  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2019

    Wow, wow, wow. I received a surprise present from my oncologist today.

    After assessing my most recent scans and my long progression-free history, he told me that I could go another three months without treatment if I wanted to, and if doing so wouldn't make me nervous.

    I want to. And it won't.

    Tina



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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited January 2019

    WOOHOO, TINA! I am so excited to hear your good news. I am doing the happy dance here. I hope you that your oncologist continues to give you wonderful surprise presents like this again and again and again and again. WOOHOO!

    Hugs and prayers from, Lynne


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  • pajim
    pajim Member Posts: 2,785
    edited January 2019

    Woo hoo Tina!!!!!!!! Happy dance here!

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  • Tina2
    Tina2 Member Posts: 2,943
    edited January 2019

    Thank you, Lynne and Pam!

    I am rather giddy about this continuing reprieve. When I asked my doctor what symptoms to look out for during this continuing hiatus, he ticked off unexplained pain, persistent cough and unexpected weight loss. When I asked him what happens if I develop mets in the interim and consequently feel guilty, he said "Blame me." Needless to say, I declined in advance! It's my decision, after all.

    I'm trying to not make too much of this, but I'm a pretty happy camper for the moment.

    Tina

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited January 2019

    Hi Tina, well a lot of us eventually progress with treatment anyway. So, IF you were to progress after 5 or 6 months (or years) with no treatment, There is nothing to indicate that you wouldn't have had the same progression while ON treatment. So you might as well enjoy the treatment free ride, my friend.

    Stefanie

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2019

    Reporting in with a Midsummer Update:

    My friends,

    Last month's CT and bone scans showed no changes. I have no symptoms of progression, so my oncologist and I agreed to maintain the status quo.I will see him again in late October, which will be a solid year off treatment with Faslodex.

    It's been eight years since I was diagnosed with mets. Thanks to notices from Bestbird and others in this forum, I've applied to two studies in hopes of putting my good luck to use for the benefit of future patients. I'm in the Dana Farber MBC study and should be accepted into the University of Wisconsin "Outlier" study if the tissue sample from my lung biopsy proves adequate.

    How about that?!

    Tina



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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited July 2019

    Tina,

    WOOHOO! WOOHOO! WOOHOO! I am so happy to read your great update. This definitely deserves a happy dance from me.

    Do you remember Lindalou? She doesn't post very often these days. She is involved in the Outlier study at the Universtity of Wisconsin.

    Thank you for keeping us informed.

    Hugs and prayers from, lynne


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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited July 2019

    Tina, that’s so amazing, nine months off treatment! Congratulations! How’s your body adapted to no meds, do you feel more like your old self so to speak? I’d love a refresher on how you came to learn you had stage iv bc after your initial diagnosis in 1985.

    50sgirl, nice to “see” you!


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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited July 2019

    You must be ecstatic, Tina!!! What a surprising turn of events this year- time for another trip, if only to see how you can manage climbing around europe now!

    I checked your byline, expecting you to be HER2positive, but no, ER/PR+, glad to hear science is taking a peek at your cancer

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  • Chicagoan
    Chicagoan Member Posts: 728
    edited July 2019

    Good for you Tina! Hope your hiatus lasts indefinitely. Also hope that others of us may join you!

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  • josgirl
    josgirl Member Posts: 231
    edited July 2019

    this is awesome news

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited July 2019

    Wow. 3 months. Freedom.

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  • KSkier
    KSkier Member Posts: 467
    edited August 2019

    I know that giddiness: but I also understand the anxiety that accompanies it. I too found myself in the exact same situation last week. I am to decide by today whether to take the hiatus, so I really appreciate finding a post I can share with. I have also been on the same treatment for 8 years, and with just the recent two week break that I have experienced I can feel my body recovering, regaining strength and stamina. Gosh, to just not "feel" like a cancer patient for 3 months!

    I like what you wrote about feeling as though the doctor has some statistics to back up his recommendation, and that giving you some peace. I have the unfortunate/fortunate situation of being on a trial medication: I am the statistic. I have had the benefit of having my lung mets suppressed for 8 years...but the doctors can't tell me anything about the long term side-effects of the medication. That is what we are worried about.

    I am leaning about 85% towards taking the hiatus, then dealing with the stress of the next scan in three months when it comes.

    Let's check in again soon!

    KS

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  • Tina2
    Tina2 Member Posts: 2,943
    edited August 2019

    KS,

    We are buddies now!

    I had to laugh when I saw your initials. One of my dear friends and I call each other the Klutz Sisters because of many funny mishaps together (and apart) over the years. We sign our emails KS I and KS II.

    As far as the ongoing hiatus is concerned, I find myself thinking weird thoughts such as "What if the lung biopsy was misread years ago and I don't have mets at all?" and "If the cancer comes roaring back will it be ungracious/ungrateful of me to be ticked off having had such a long reprieve?" Absurd, I know, but there it is.

    Please keep me posted.

    Tina

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