2017 Diagnosed-- A Place To Share "Whats Next"
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thx scraffgal & dogersgirl, I'm just waiting to see if I can get IVIG to boost my immune system - if so I will need my port. My rheumatologist is taking her sweet time. Otherwise, I don't need it anymore. Glad your test are over Scrafgal and can enjoy the Holidays!
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Thank you, rljes....I also just had my heart checked by an onco-cardiologist at my cancer center. I think that I posted the drama that the other cardiologist put me through...wanted all of this additional testing etc. Well, we got to the bottom of things. Essentially, my EKGs might never be quite normal after chemo and all of the surgeries that I have had due to bc. So, that is not a good test for me. My echocardiogram was mostly normal, except for one thing Global Longitudinal Strain (GLS) factor percentage. It was borderline for a normalperson but, given my chemo, apparently no so bad. Instead of cardiac PET scans and the like, my new onco-cardiologist is suggesting echocardigrams and blood testing every six months (as surveillance). The GLS is considered something that could signal future issues with the main stat from the echocardiogram Left Ventricle Ejection Fraction (LVEF)., if the GLS worsens. It goes south long before LVEF.. MY LVEF was normal and the GLS was borderline. That is why we will monitor. The new blood test is a canary in the coal mine for the GLS! So, it tells whether the heart is strained BEFORE a significant GLS decline, based on something that the heart emits into your bloodstream! So, that is why we will monitor with blood tests and GLS on echocardiograms, every 6 months. BOTH will precede any major issues with my heart. By the time LVEF is impacted it is sometimes not reversible. Medical science is fascinating! There are plenty of treatments to keep me from going down the cardiac failure path--even things that could reverse any issues at this early stage. It used to only work on the HER2 positive chemo but now this drug has worked on those of us who had the red devil too. AMAZING. I felt so much better after that appointment. I hope that I won't need the drug but I am glad that we have it as an option.
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Oh My Scrafgal! You have quite a knowledge of medical issues! Good for you. (must drive your doctors crazy!)
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Actually the best of my doctor's appreciate it...the other's... I do bug a bit. The thing is, I don't want to have to do all of this research for myself, but I was not getting answers from the first cardiologist. (at a general hospital practice). I kept reading and questioning him until, finally, he told me that he had to call a specialist in onco-cardiology! I was teaching him things about the effect of the chemo on EKG and echocardiograms...just didn't seem that knowledgeable of cardio-toxicity issues. So, then I decided to ask my MO to refer me to our own (MD Anderson) cardiologists. The guy they sent me to was wonderful...and started the onco-cardiology practice at MD Anderson. He is just awesome!
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Scrafgal - that is fascinating! We never rechecked my EF after adriamycin, just did a check before. I will ask my GP about it next time I see her and see whether I should be getting that to get a new baseline.
I have a breast MRI on Thursday - the 2 yr anniversary of a successful surgery so I guess it's my cancer free anniversary as well - so that's looming a bit in my mind. (it's just my regular screening thing; they agreed to do 1 MRI in lieu of a diagnostic mammo at my request).0 -
scrafgal— wow. Thank you so much for sharing your cardiac related information. Had no idea any of this existed so will file this away should I need it later. The trick now that s getting chemo brain to remember it!
Moth- best wishes for your MRI Thursday.
Rljes— I don’t know what IVIG is but hope it all goes well.
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Here's another WOW: My EKGs make it look as though I could have had a silent heart attack! However, the echocardiogram shows that I did not--they can tell by what the echocardiogram shows in terms of the structure of my heart chambers, wall thickness etc. The EKG abnormality is totally due to the chemo...and the effects can take a while to show up on the EKG--as did mine! This is why my onco-cardiologist told me to always tell any physicians who might take an EKG (like before a colonoscopy or in an ER situation, for example), that I had the Red Devil, so they need to do an Echocardiogram to get a better look at things. I was shocked to see this on the report and hear my doctor say this. Chemo is no joke!
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Moth
Congrats on that anniversary!
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That is really interesting Scrafgal. I often wondered about my heart. I'll have to have a conversation with my MO next time. I remember having a baseline Muga pre chemo but haven't anything since. I have a physical coming up it will be interesting to see what it shows.
Good luck with your MRI moth. Hoping it is clean, uneventful, and gives you peace of mind as we reach our two years out anniversary.
Rljes, hope the IVIG does the trick for your immune system.
I went for my annual follow up with the PS last week but when I got there they said the dr wasn't there and I had cancelled my appointment back in May. Ummm, pretty sure I didn't cancel an appointment for December back in May. Rescheduled for January now. At least I got the afternoon off work to do a little shopping.
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Scrafgal, that almost sounds like the kind of information that could go on a medic alert bracelet, in case you are ever not able to speak up in a situation and tell someone your heart has been affected by chemo. Heart issues are pretty profound and having that info easily visible where medical personnel can find it might be beneficial to you.
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Legomaster, like most of us who had the red devil, I had an echocardiogram before chemo. My heart was very strong...better than average fora 50 year old is what they told me. So, they felt confident giving me chemo, particularly the FAC regimen.
I had a post-chemo echocardiogram and it was normal. I had an EKG (normal) and an echocardiogram a full year after chemo (normal for the LVEF. The the GLS percentage had slipped a bit, it was still in the low-normal range). This recent EKG (abnormal) and echo was just over a couple of years post chemo. The LVEF was normal and the GLS had slipped a little more.
My onco-cardiologist said that EVERYONE should have, at a minimum, a pre/post echo after taking certain chemo regimens (red devil included...I think he mentioned herceptin for HER2+ too). Yet, he said that his field, which focuses only on chemo carditoxicity, had not yet changed the practices of many MOs let alone PCPs. He said that I got a post-chemo check because at MDA we've made inroads with our own MOs, but even my MO likely should have encouraged regular checking long after chemo. The effects can show up 5,10, 20 years down the line. Because women are living longer post-treatment, more cardiac issues are emerging.
He also said that since I work out regularly, and did so through most of my chemo (until the last, ugley six weeks of FAC), that helped preserve my heart function. This is also why I have no symptoms of any problems now. Yet, he said this is why I need at least a regular blood test and echo to catch anything early. If I stablize where I am, then we don't need to do anything. If I change anymore, then we will treat early and he fully expects thatI will not die of heart disease (good to know).
All of this came about because I sought out a cardiologist to keep checking my heart, even though my own MO thought I was fine after the first couple of checks. So, I would suggest that anyone who had the cardiotoxic chemos keep checking their heart. However, you should find someone who knows about chemo-cardiotoxicity. Otherwise, they might miss the early warning signs OR think that you have more cardiac issues than you do. Why? Because it is likely that, at least early on, your heart took some sort of a hit, even in the smallest way. So, it is about getting someone to view your echocardiograms in the context of what your heart has been through!
On the flip side, he suggested that the average cardiologist (not trained in cardiotoxicity issues), might take one look at my general good health and habits, look at the normal LVEF and basicallly think that all is well until the LVEF is impacted. By then, however, things are much more serious and harder to reverse. The key is to catch things early, and the blood test and echo GLS% metric on the echo are the early warning signs that continued monitoriing is necessaary. He said that more will get published about all of this in the next 5 years, and then the PCP and MO practices will start to change to some standards of care.
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Legomaster, like most of us who had the red devil, I had an echocardiogram before chemo. My heart was very strong...better than average fora 50 year old is what they told me. So, they felt confident giving me chemo, particularly the FAC regimen.
I had a post-chemo echocardiogram and it was normal. I had an EKG (normal) and an echocardiogram a full year after chemo (normal for the LVEF. The the GLS percentage had slipped a bit, it was still in the low-normal range). This recent EKG (abnormal) and echo was just over a couple of years post chemo. The LVEF was normal and the GLS had slipped a little more.
My onco-cardiologist said that EVERYONE should have, at a minimum, a pre/post echo after taking certain chemo regimens (red devil included...I think he mentioned herceptin for HER2+ too). Yet, he said that his field, which focus only on chemo carditoxicity, had not yet changed the practices of many MOs let alone PCPs. He said that you got a post-chemo check because at MDA we've made inroads with our own MOs, but even my MO likely should have encouraged regular checking long after chemo. The effects can show up 5,10, 20 years down the line. Because women are living longer post-treatment, more cardiac issues are emerging.
He also said that since I work our regularly, and did so through most of my chemo (until the last, ugley six weeks of FAC), that helped preserve my heart function. This is also why I have no symptoms of any problems. Yet, he said this is why I need at least a regular blood test and echo to catch anything early. If I stablize where I am, then we don't need to do anything. If I change anymore, then we will treat early and he fully expects thatI will not die of heart disease (good to know).
All of this came about because I sought out a cardiologist to keep checking my heart, even though my own MO thought I was fine after the first couple of checks. So, I would suggest that anyone who had the cardiotoxic chemos keep checking their heart. However, you should find someone who knows about chemo-cardiotoxicity. Otherwise, they might miss the early warning signs OR think that you have more cardiac issues than you do. Why? Because it is likely that, at least early on, your heart took some sort of a hit. So, it is about getting someone to view your echocardiograms in the context of what your heart has been through!
On the flip side, he suggested that the average cardiologist (not trained in cardiotoxicity issues), might take one look at my general good health, look at the LVEF and basicallly think that all is well until the LVEF is impacted. By then, however, things are much more serious and harder to reverse. The key is to catch things early, and the blood test and echo GLS% metric on the echo are the early warning signs that continued monitoriing is necessaary. He said that more will get published about all of this in the next 5 years, and then the PCP and MO practices will start to change to some standards of care.
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Runor, I was thinking about that too, but I don't know what would go on ther wristband. I will ask my doctor about this when I get my heart checked in 6 months again. The risk is that a paramedic does an EKG, sees the abnormality, thinks I've had a heart attack at some point in the past (or at that time), and treats me as such, even though the abnormality is NOT due to a heart attack but due to chemo. I wonder if whatever they would do would be harmful or just over-protective and unneessary? I don't know...
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this is a post I hoped to never make. For 2 weeks I have had lower back pain which keeps me up at night. I have a long history of sciatica so wasn’t too concerned until I couldn’t stand the pain of simply trying to sleep on my back.
I made an appointment with my PCP who thought it was a back strain. He ordered X-rays. X-rays showed a T12 compression fracture.
PCP then ordered an MRI of my thoracic spine.
I had the MRI this week. (First MRI for me. Wasn’t sure what to expect. Made it thru ok. Only real issue was from being on a hard metal bench for an hour. Back was really acting up after that)
I was told MRI would be read in less than 48 hours and results would go to PCP. Well, they must have been read right away because PCP called 2 hours after I was home from MRI with the news no one ever wants to hear—. Stage 4 BC. At least 6 vertebrae have signs of mets.
Next week is a PET scan to see if mets are anywhere else. Then on to a rad onc to see about rads to the spine. Certainly not what I planned to be doing at Christmas time
You guys can imagine how hard this news is on my family.
I will be moving to the Stage 4 threads, for the most part but will keep this thread as a favorite because I care for each of you and hope that no one else here will get that life altering phone call
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DodgersGirl
I know that my feelings cannot compare to yours or those of your family members, but I feel devastated by your news.Just stunned. I understand your need to go to the Stage IV boards but I am happy that you are staying with us on this thread. We are all in this together no matter what comes our way, individually. Please continue to keep us posted on your upcoming tests and treatments.
Sending a warm hug you way.
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scrafgal - thank you for the warm post. You guys got me thru the initial treatments. I will post here, too. This is “home”!
MO said plan is to get insurance approval for Ibrance and Letrozole. Along with an XGEVA shot monthly. Hope that between rads and Ibrance, I can slow down these bad cells and kick butt!
Hard to get my head around being back on treatments. And being on treatments forever. Sigh.
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DodgersGirl
Just the other day, someone posted an amazingly inspiring breast cancer story, beginning with her original diagnosis 30 years ago ( stage IV now for a very long time). It was in the stage IV boards and, when you are in need of inspiration, you should check out her story. Her words were encouraging to all.
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"30 years today since first recurrence." Is the title of thread
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Scrafgal- will go look for that post. Thanks!!
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Dodgersgirl, I felt dread reading just the opening line of your post and with good cause. How utterly horrible for you and at the worst possible time of year. Everyone is supposed to be all jolly and ho ho ho and you are reeling from this devastating news. I am so sorry to hear this.
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Runor, thank you.
Hearing my MO advising to think about taking a couple of weeks off after rads to do some bucket list items is pretty sobering.
One thing you wrote about that hit home to me then and even more so now was describing life as being in a glass dome out in the world so you can see the world but you are not real part of it is so true. People are out in force right now working to get the Christmas shopping done, gifts wrapped, parties attended while I wonder if I will get to rads before my back “breaks” and will I/L be enough to get me to another Christmas? Sucks
I am having ice cream for lunch today. Love ice cream but found it hard to tolerate when Taxol caused mouth sores. Going to indulge now, before I learn if mouth sores are a part of I/L for me. Winter white chocolate from Baskin Robbins. My DD brought me some.
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DodgersGirl, I am so sorry you received this news. This disease is horrid, and I hope that I/L devours every last one of those horrible cancer cells. Savor the ice cream, and I am sending gentle hugs and many healing thoughts your way.
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HersheyKiss- thanks. Ice cream was great!
I now have first appointment with Radiologist Oncologist scheduled and have a brain MRI scheduled. Can’t believe how busy I was today getting all the appointments and treatments scheduled. Worn out
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dodgersgirl- I’m very sorry you received the terrible news. I’m so f#%*ing tired of this disease. I will be holding you and your family in my thoughts.
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cpeachymom- thank you.
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Dodgergirl,
I am having a hard time putting words down. Cancer stinks!! I am shocked. You did the extra trial? I hope you have some pain relief. You and your family are in my thoughts and sending hugs. Please keep us posted. I hope that the I/L and rads wipe out all those nasty cells. A bowl of ice cream for breakfast is more than ok too.0 -
oh no, DodgersGirl - I'm sorry to hear this. It's just not fair
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Annbee- thank you. It’s still hard to really believe this new dx. I find myself thinking, “will kills these mets and all will be ok” just like the first time through but rationally, I understand stage 4 is not curable in most incidents. Kinda takes the joy out of the holidays this year but working on turning that feeling around. Going to my dad’s tomorrow and family will be making Christmas cookies. I will help where I can. It should be a good day. We all need good days! And, yes, I did the clinical trial. I have asked to find out which arm I was in. Did I get the placebo and not Afinitor?
Moth- thank you. Cancer does suck. “They” say the 30% of early stagers go on to MBC. I tell myself that my diagnosis could mean someone else I know won’t advance to Stage 4.
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dodger girl , it will be a good day and more to come.
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Still thinking of you, DodgersGirl. Enjoy your time with family.
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