So having completed my first round of Ibrance, I've had my first scan and been back for results today (had quick scan because of breathing problems). There's good news and not so good news. I'll start with the not so good because I always like to finish on a high :).
So, I've been getting more breathless recently and a lady on here suggested it could be superior vena cava syndrome - cancer is in my chest and neck lymph nodes (amongst other places). Turns out not to be that which is good but apparently, the cancer is presenting itself as plaques in my chest wall cavity which is what's causing the problem and unfortunately, even if - I say when!! - we manage to kill the cancer off, it will leave scar tissue so this is going to be my new reality. I have to say I'm gutted because so far this is the thing that's been holding me back. My daughter made a good point though and said mum it's not stopping you doing anything though, it's just slowing you down a bit. Fair point and a good way to look at it. I've no intention of taking it at face value - not had time to research it yet but will be doing so. I've already had some valuable info off another lady on here in another post so will defo be looking at what more I can do.
I also took learning from various posts on here where I saw people were asking for print outs of their blood results so I asked for mine and told her last time when they said my bloods were "fine" it didn't really mean anything to me. THe Onc said if there's anything wrong we'll let you know - you won't really understand the print out! hmmm!!!! I just said, it's ok, I'll learn :). Cheeky mare lol. She's right though, i don't understand it but I'm going to get my friend's hubby to go over it with me - he's an A&E consultant at Jimmy's in Leeds, UK. Once I've had a few print outs, I can keep track of the ups and downs. I told her I'm just inquisitive and like to understand things. She was ok but I felt a bit patronizing. Same when I asked about PET scans; I'd seen these mentioned a lot on here but didn't really understand the difference between CT/MRI/PET scans. She told me it was too scientific to explain!!! hahaha - erm ok, fine , I'll just have to Google it then lol. I'm laughing a bit but actually, I honestly wasn't in there more than 10 mins. I know it's because they're so busy in NHS but come on, I'm sure they could spare me a bit of time to ask my questions, especially as I'm so new with this.
But never fear, here come the positives.
The scan showed 2 more areas of mets on my spine which sounds bad on the face of it but I was previously told this could happen, ie once treatment starts, more areas could show up; it's apparently because once the treatment starts to get to the cancer and heal/harm/kill it, it's more visible on the scans. Therefore, it's not spread further - we just couldn't see it before - and if it's showing now, it means the chemo is working. I'm going to definitely take this as a positive.
And the best news of all - saved the best for last - the mets on my lung has already shown signs of shrinkage!! How great is that after just one month - Ibrance and Letrozole. I'm over the moon with that.
Anyway, it's my birthday today so I'm off to get ready now - double celebration. Out for tea with my hubby and (adult) kids. Might even have a celebratory glass of vino :).
Take care everyone
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Mindysooty
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Definitely have that glass of wine! Savor those moments with your hubby and adult children. Congratulations on the good news and hopefully we will be able to say ‘they didn’t know what they were talking about’ concerning the scar tissue in a few months. The body has surprising regenerative powers.
Congratulations and happy birthday you deserve that vino x
Congratulations and happy birthday!
Hold on to the good news and continue to be 'annoying' to the condescending staff that is required to give you your results upon request. Continue to be your own best advocate....you're doing great
No I get that but I do think if someones asking a pertinent question, we should get an answer, even a simplified one would help. They never asked what I do so I could be a brain surgeon for all they know 😂. I wish lol. Definitely not googling other than the types of scans or I could ask my friends consultant hubby that too as well as looking at the bloods chart.
Had my glass of wine and blooming enjoyed it. 🍷 Cheers x
This is a great comment, it helps to see both sides. It's a shame you feel like the Onc is not regarding you as an equal, I think sadly that is a familiar trope. Although, I don't think it is intentional, it is possibly to do with how they are trained and as you say, time constraints etc.
I am not medical in any way but we have copies of my wife's bloods etc. to share with COC and Integrative Therapist. It literally meant nothing to me on first glance. But after just slowly looking at the ranges and readings (in bold) I could investigate what they were and what they mean.
It's certainly not an expert view but it means that we can tell when immune system is dropping (neutrophils) or anaemia (haemoglobin) is worsening. That info helps us to know how the body is responding (and also what Neutropenia and Anaemia actually are). I guess over time we will get familiar with/be interested in other readings too.
Mindysooty the data they collect is yours, you can ask for it. Take it away and digest it (with help or go solo if confident enough). I think it is useful to understand even a little bit, and if you're taking the information away with you, you won't have to have these unhelpful interactions with your Onc. Then ask more informed questions on your next visit ;).
Amazing news regarding your early response to treatment, it's a good confidence boost and that is exactly what you need. And feeling in control rather than passive will add to that. So asking questions is important too.
Yeah with the bloods as I collate them I'll compare to assess when wbc is at its lowest so I can know when is best for me to work from home - stay away from germy gremlins lol. It might not be so straight forward but I can try. Also like some of the others are saying, useful if I was a second opinion although I suspect we would just request a copy of everything if that arose.
I get a copy of all my scans including CD and keep s file of my own it came in handy when I went for s second opinion. As far as the blood work I don’t pay attention to that but a PET scan and MRI always have the explanation at bottom of report.
Oh do you. I might do that as well then. Ive written day 15 on my bloods and each time i get results Ill do the same ie write which day of the cycle it is and compare. It'll help me to see when wbc is lowest so I know which week to work from home when Im at my most vulnerable. Thanks Barb x
Mindy, I'm a long timer with mbc--15 + years, and have met alot of others with mbc, both on line and face to face. With an E + cancer, 3-4 months of treatment may not be enough to see positive results, so yours are good! I have a bias about Ibrance, as it damaged my lungs, gave me something called interstitial lung disease. A pulmonologist diagnosed it and you might want to see a pulonologist. They can prescribe treatment that helps with the out of breathness, and might suggest stopping the Ibrance. It's too bad that your onc isn't more forthcoming with info, including the scientific stuff! Maybe she has too many patients and is rushed and not wanting to spend the time..... You can probably get copies of your scan reports by asking at that department. Enjoy your birthday, and may you have many more! Some of us do!
Ah thanks for your response. 15 years + - amazing and Im so pleased for you. Youre the 2nd person to mention a pulmanologist so I think thats definitely something I should be looking at but because of my quick response to Ibrance Id be a bit wary about stopping so soon. I'd have to look at all the options. The do think the problem for the Onc is time constraints. They always have so much to do and are so busy but this is our lives literally so I will still ask my questions - maybe the nurses can gives answers in less of a rush. Im sure I'll find my way through everything. Ill ask the nuse about copy scans. Thanks for the advice and long may you continue with your own success. Take care x
So, I hate that I am so self-consumed with this but it's just my 2nd cycle with ibrance and I feel like I have copd so I stopped taking it to see if it's an infection or the meds and 3rd day off of it and breathing is clearing up. It felt like my lungs were full of fluid and although i've had allergies before, it was mainly runny nose and sneezing, not filling up my lungs. Here's my dilemma, and maybe it will help someone else, my ANC was 1.64 a week ago, and they are doing a CBC every two weeks, BUT ... my ANC started at 3.5 and within 2 weeks dropped to 2.5, then 1.6; so after 1 week, how do they know it hasn't dropped another 1,000 and put me in the danger zone as I read that anything below 1,000 puts you in danger of infections from the bacteria in your own body, mouth and dental, etc. so I called and instead of letting me come in for bloodwork they said go to urgent care if you're concerned. so now I am debating whether or not to continue with the ibrance because I never had breathing problems before, even though the CT showed numerous lung nodules. I reach out to you because you have experienced breathing problems as well, it feels like copd, and want to compare notes with you. I would like to take it another 5 days and if the breathing gets bad again, then I will know it's the ibrance/infection and just quit it or maybe a dose reduction, I'm already on 100 mg. I called the dr's office and the rn never called me back as she was supposed to, then I got an email from the dr. that he would call me at noon, which he never did. I am getting NO support from them and it seems they don't care, since I turned down having scans ever few months, they don't even seem interested in me. I am going to read about interstitial lung disease and I am so sorry you are suffering with this and sending prayers! I have a sneaking suspicion that maybe this effects moreso the ones of us who have many lung nodules to start with, and maybe it is the scar tissue but to me it felt like someone had laid plastic over my lungs so no air could get through, very different from allergies from years ago that did make me chesty and I could just cough that stuff up. Please forgive me if I am taking more than I am giving right now I feel very needy. <3 xo I will lift my head and say still, God bless you and heal us all in Jesus name, amen!
You don't need to apologize for being "needy"! Getting this diagnosis throws most of us for a loop and we are not at our best! Like I just wrote to Mindy, above, we don't have wiggle room when we are dealing with mbc and calling our onc or going to the ER if we even think of doing those is what we need to do! Better a little too often than not quite often enough. I forget what you are on along with the Ibrance, but those anti-estrogen meds worked well and long for alot of us before meds like Ibrance came along and personally, I think Ibrance etc get too much credit that really belongs to the older meds! I have a lifetime of hay fever type allergies and multiple bouts of pneumonia before the pneumo-vac came along and just assumed that made my lungs vulnerable but the pulmonologist told me it is really just the opposite and that my lungs are "stronger' than most because of all the work they had to do to manage to get oxygen into my body in spite of allergies/pneumonia, which kinda makes sense. ILD feels alot like copd and I have two inhalers for it. Go to urgent care or ER or your onc's when you feel iffy about things...... really, we jsut cannot afford to wait! Too much can go wrong quickly. I wish all oncs would tell patients that!
Awesome news on the whole! And Ibrance will kill the cancer! Keep up with latest research online - my Oncologist is amazed every time I tell him the latest updates on our MBC treatment - that he just learned as well! Be your own advocate.
Prayers for continued healing and Happy Birthday! Mine is Sunday and I'll be 64 - thrilled to be here another year! Celebrate!
Yeah we dont always get to see the same person, we sometimes get registrars who are usually lovely but you need to build a relationship and trust with the head honcho. As I go through the journey Im sure I'll settle down. I just want all the answers, like now! lol . Im sure when I look back in time to come I'll realise wasnt always possible.
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Mixed news
Brain scan
Mixed Response
CT scan results
