De Novo Stage IV
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You’re all very kind to say that I seem to be handling this well! It sure doesn’t feel that way at all. Yesterday and today just happened to be days where I’m not too far down the rabbit hole with high emotions and tears - that was earlier this week! 😛 Thank you for the support and advice I have received so far. It does make a difference!
illimae - thank you for the background on the brain mets. I’m sad to hear there isn’t much we can do to help prevent it, but knowing there is potential treatment for them is promising.
exbrnxgrl - response to treatment being a crap shoot is a hard pill to swallow. Accepting that all of this is out of my control has been really difficult for me. I wish I was more like you and some of the others on here who seem to be able to accept our new reality and go with the flow more easily.
seeq - thank you for the clarification on ILC and scans. I didn’t clue into that from all the different posts I had read. It is somewhat of a relief that I’m feeling the treatment work…I’m just still in the stage of wishing this wasn’t my life and it’s hard for me to see past that.
jobbibo - what great news that your August scan showed that your liver mets were shrinking! I hope they continue to get smaller and smaller. That’s interesting about the trial. My MO hasn’t mentioned a thing about trials to me. I’m going to look into that one more and follow your story closely. I wish you the best of luck on that trial and that you get the actual drug and it works!
kbl - I do have access to a portal that stores all my test results. What specifically should I be looking for in the bloodwork? Below are all the tests that are typically ordered for me:
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harrow,
I'm not denovo, but follow this thread. There are two usual blood tests, repeated regularly. These are CBC Complete Blood Count, and CMP Complete Metabolic Panel, both have multiple components. There could be other labs, but these two seem to be routine. I think a good way to follow your labs (and learn) is to create an EXCEL spread sheet - giving each test it's own sheet. That way you'll easily see over time your ups and downs. Patient portals often display labs in a useful manner (i.e. line or bar graph) over a designated time period, but I think looking at the just the numbers over a long duration is more useful. Just a suggestion.
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I also keep a spreadsheet with my lab results. I wonder how many of us do that (I'm thinking lots). I use one color to mark results that are at the edges of normal and another color to mark those outside the normal range. It helps me to see there are fluctuations over time - sometimes in and out of normal ranges - over time. If I see trends that worry me, I can talk to my MO about the results.
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weninwi and seeq - thank you for the suggestion about the spreadsheet and the explanation about some of the tests. It would have never occurred to me to track the results that way. I just assumed the bloodwork was simply to confirm whether I am healthy enough to have my next treatment. I guess I should be asking more questions…
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Harrow, those are the tests I get as well, they just add in the tumor markers, and now I will be having my cholesterol checked monthly on Orserdu because it can raise your lipid levels, and mine are already on the high side. I was prescribed Lipitor but stopped taking it for now. I do see Lipitor can interact, so I’ll ask about a different statin.
weninwi, I have never learned to use Excel. Maybe I can take a class. The problem is I’ve had so many blood tests, I think it’s too many to start new, but maybe I could do a year’s worth.
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harrow, living with mbc can definitely be an emotional roller coaster. Some days you’re up, some days you’re down. As for acceptance of the diagnosis, please don’t compare your new beginnings with those of us who’ve been here awhile. Learning how to cope is a process that occurs over time. Allow yourself to feel every emotion without judging yourself. We’ve all needed time to grieve the loss of the life we thought we were going to have. I can tell you that to my surprise, I’ve had some of the best moments, best times of my life since the mbc diagnosis, not because of it but in spite of it. I would not have thought that at first. I’m glad you feel supported by this forum, it’s been a major source of strength for me, too, over the years. It sounds cliche, but it really helps to take it one day at a time, to learn to live more in the present moment. I wish you all the best.
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I agree with divine! Most of us have had some time to process the reality of stage IV but we were once in your shoes so well remember the emotions. Please be gentle with yourself.
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kbl - I hope you are able to find another medication that doesn’t interact. I’m curious as to why your MO would prescribe you a drug that does?
divinemrsm and exbronxgrl - thank you for those words and the reminder that I’m still very new to all of this and it’s ok to be so all over the map with my emotions. I need to hear that and repeat it to myself.
I had an interesting follow up appointment today in preparation for my 3rd treatment. The bloodwork looks good and I’m going ahead with it. But what made it interesting is that my appointment was with a different MO who is covering for my MO while she is on vacation. Honestly, it was like night and day. This is the MO I need to be with. She was kind, patient, knowledgeable, experienced. SHE asked ME if I had time to talk while she explained things that I had no idea about because my MO hadn’t told me. I learned that my DCIS won’t respond to my treatment because it’s not actually cancer so not to be disappointed or discouraged. I had no idea that was the case. I learned that I am considered one of their “difficult cases” because there is uncertainty about whether I am Stage III or Stage IV due to the inconsistencies with the scans. She said that they don’t always know for sure on the scans and haven’t confirmed by biopsy, but they always err on the side of caution when that happens. So they’re treating me as if I’m Stage IV…for now. She emphasized many times that I am on the very best treatment available for HER2+ and patients typically respond very well to this regimen - she has patients that have been on it for over years and years. She spent an hour with me answering all of my questions/fears about the inconsistencies with scans, brain metastases and treatment, NED, etc. Anything I could think of. I left that appointment feeling hopeful and validated. She told me that they will do everything in their power to help me, which was amazing to hear. My MO never said anything like that to me. She just told me I was Stage IV, I would be treated palliatively, apologized for it not being news I wanted to hear and asked if I had any questions.
After I left, I was trying to think of how I could find out from another staff member (anonymously) how I can request for her to take me on as a patient. I would have absolute confidence that she is doing everything she can to help me live as long as possible. I do not have that confidence in my MO at all. I’m not sure how to go about it or even if it’s an option that since they’re all at the same clinic. I might try seeing if I can find out this new MO’s direct office number and leave a message with the request for her assistant. I’d rather not say it to my MO’s face if I can. I’m a bit conflict-avoidant.
Sorry again for the really long post. I just had a somewhat positive day and wanted to share.
Thank you for listening. I hope you all have a wonderful weekend.
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harrow,
Switch! It appears that you are about to enter into a long term relationship with an mo. Being comfortable and feeling like you’re being heard is very important IMO. I switched MO’s very early on and am very happy I did. Unfortunately, after about 9 years, she moved back to her birth country to take care of her parents. I miss her but I’m beginning to develop a rapport with my new mo (COVID really got in the way of that). Take care
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Harrow - my situation was a bit different. I had been referred to a specific MO - with glowing references from the GE who ordered the liver biopsy and my great GYN . Due to some weird stuff with my insurance and his credentialing (after he moved from another state), I had to start with a different MO in the same group for awhile. I kept pressing for the switch to the referred MO, saying I didn't doubt his competence, but we weren't a good fit. His style just wasn't right for me. When I finally got to the referred MO, it was like night and day; communication was so easy and natural. I really hated to leave him when we moved to another state.
My point is that I would push to make the change. You're likely to have a long relationship with your MO. Having one you're comfortable with and communicate easily with,is so important.
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Harrow, sorry for the confusion. I went to a cardiologist who actually prescribed the statin, and I took it for about a week. I’m not great at taking something I don’t want to be on, except for cancer meds. I just got prescribed the Orserdu and haven’t started taking it yet, so I have to talk to the MO about a different one. I will most likely take it if my lipids go up with the med.
I’m so glad you had a good visit with the MO who came in when your doctor was on vacation. If there is any way to switch, I wouldn’t hesitate. We all need to have a connection that suits us.
I also had a visiting oncologist while my new one was out, and I really liked her, but she is a rotating doctor, so I can’t have her regularly. I’m still trying to get to know this new one, and I’m tired of switching (I moved, so I had to and then didn’t like the one I had). I came closer to home but with the same cancer provider. I do really like his nurse practitioner, so if I don’t get a connection with him, I will ask for her regularly. I’ve done that before.
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Harrow- it's about time that I checked in with you. In 2 months, I will start my 22nd year since my dx of Stage 4 MBC de novo with liver mets.
If the spot in your liver is tiny, it is okay to wait. My "spot" was 3cm and 3 biopsies missed it. So it was assumed to be just a lesion (it wasn't). In 2004, my liver was filled with large actively growing mets. I had a liver resection and then 9 months of Gemzar & Herceptin cleared out my liver. My liver is still clear.
I remained on Herceptin for 9 years, and then had a recurrence in 2 chest nodes. A clinical trial got rid of those and I have been on Herceptin and Xeloda for almost 6 years. Now it seems that I have a lung tumor, and will have a biopsy in a few weeks.
So I agree that Herceptin is great. I was ER+, PR-, Her2+++, but now Her2- somatic. I am having more tests done to check on my current status-with Guardant and Invitae.
I have never heard that 50% of us are prone to brain mets and that sure seems high. I am a certified volunteer counselor for the ACS program called Reach to Recovery and have helped 100's and 100's of ladies through their treatments with most of them being Stage 4. And very few had brain mets. Most doctors won't do a brain MRI unless you have symptoms. I recently had one, only because I had a weird spell and fainted.
I also agree that you should try to remain with your MO since you like her. Patients often switch doctors.
I do check my CBC levels and do question my onc, who tells me that a small deviation is no big deal. Also, since I have been on chemo for almost 22 years, a deviation is to be expected.
My advice is to take it easy and try not to worry so much. Of course, I have gone through this, since in 2004, I statistically only had a year to live. But now as the years have progressed and I am still hanging around, it has gotten easier.
The main thing to remember is that there are tons of new treatments available for you. So much has changed in the past 22 years and I am amazed at how many chemo options we now have.
Please keep in touch with all of us!
Denise
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Harrow, I love that you found the MO you need. A request to change should be within reach, possibly through a hospital or clinic admin or patient advocate.
As for brain mets, it is typical to wait for symptoms, although MDA did a baseline one, not sure if that was due to the initial stage IV diagnosis, being HER2+ or both but I say that if you’re ever very concerned, you can always fake a headache. Mine were found due to an unrelated tension headache turned migraine, I was very lucky.
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illimae…I agree. I begged for 21 years for a brain MRI, but I had no symptoms. My onc said that brain mets were rare, so I went with that.
Besides my fainting, I also had kaleidoscope vision, which turned out to be from hypoglycemia.
So I didn't have to fake that and did get an MRI.
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Hello everyone, it is nice to see our thread getting active. I hope everyone is doing well and has a purpose to keep going up and beyond.
@harrow Hi, I echo what ladies shared here and I am sending you a big hug.
Ref MO situation, I have switched 2 times! I must admit I was never comfortable with my first MO, but because I wanted to be professional I didn't make a move until I had to. unfortunately, my second MO at the same clinic was disappointing, she seemed indifferent and repeatedly forgot to order scans, and she is old school being in practice for 45 years! and strongly disagreed with targeted therapies like Ibrance and pet scans! due to delays in monitoring, the cancer from bone only spread to my liver. I shared this story because I have finally found the strength to make my own decision without regret. I do not have a strong support system that I can rely on, so I am proud of myself despite of discouragements I decided to transfer to a smaller clinic with a new MO and a nurse who is incredibly supportive. the new clinic doesn't have as many facilities as the previous one ( a large teaching hospital) such as its own laboratory so they send blood samples to a large lab, and yeah there is no fast track option anymore but I feel happier here because they treat me as a person not just a number or case for their irrelevant trials as the teaching hospital did. I hope my story gives you encouragement. put yourself at top priority and don't worry about hurting MO's feelings! they are there to serve you and if they can't there is no reason to keep them. your mental health is equally important, your care team should be able to provide you peace of mind.
@denny123 it is always nice to read your posts, cheers to many many more years
@kbl I started Elacestrant so far tolerable just make me a little sleepy, and my MO will monitor cholesterol from next month.
@divinemrsm thanks a lot for your post, every word is so true. I have been following your posts on DWTS thread and enjoy your critiques on the show!
All, I'll have liver biopsy under ct next week, if anyone here has been through this before, I'd like to hear about your experience. Thnxx
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Harrow,
I'd encourage you to seriously consider making a transfer request to the covering MO who made such a favorable impression. I'd say this early comparison between doctors was fateful. Maybe direct your request to the head of the department, or maybe through a social worker, or your idea to talk directly to the MO you like. I think that might be the best approach. Put your reasons in a positive frame…" I think it will be a good match" "your communication style fit's my learning style" "I appreciate your emphasis on communication, educating, willingness to provide and explain details, etc, etc". Write your thoughts, all your reasons out on paper. As several commenters have said here your relationship with your MO will be long term.
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Snow-drop - I had a liver biopsy in 2020. Overall, it was very easy. They did the biopsy under twilight sedation, injected some kind of foam to apply pressure afterwards, and I stayed and laid on my right side for a couple hours to reduce the bleeding risk, then I took it easy for a few days. I did have some pain immediately after the procedure, which they were not expecting, and so it took awhile (too long, IMO) to get pain meds for me. Other than the delay for pain meds, it was easy peasy.
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Snow-drop, I’m so glad you’ve started. I will be starting either the 17th or 18th. I have pills in hand. It is weird that there’s no break with these. I’ve always had some kind of break. You are in the 345mg per day? That’s where I’m starting. I’ll keep you posted.
Happy this thread is up and running again as well. It had become too quiet.
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exbronxgrl and seeq - thank you for sharing your stories about how changing MO’s was the right decision for you. I feel it’s the right move for me as well, it’s just a matter of navigating how to do it. I was able to get the contact information for the Patient Relations department here, so I’m going to start there and hope they take my request seriously and not just try to make me work with my current MO to improve as a learning opportunity.
kbl - sorry for my misunderstanding of your situation with your meds! I have so much to learn still. I didn’t realize that there would be different types of doctors on your medical team. I just have my MO right now, but different doctors for different concerns makes sense. I hope you are able to form a connection with your new MO, but if not, I’m glad you’ve found someone on your medical team that you really like! Hopefully the nurse practitioner will be available for you more often than not.
denny123 - very nice to hear from you! Your story is incredibly inspiring and one I hope to tell people about myself one day! The “diagnosis by exclusion” spot on my liver is 0.9cm and the one they think might be a cyst is 0.7cm. There are also few other scattered predominantly subcentimeter tiny lesions which they noted are too small to evaluate. My follow up scans at the end of the month will hopefully provide more clarity in terms of what’s responding or not. What does Her2- somatic mean and how did they know to check for changes in your subtype? As for the brain mets stat, it was something I read while doing all my freaking out googling, so I could be totally off on the number. I much prefer your experience with it being not common! The covering MO also said they don’t do brain MRI’s unless there are symptoms.
illimae - I’m really happy to hear yours were found by happenstance! And thank you for the great suggestion about the headache! I will keep that in mind. I do get some slight headaches that I notice but don’t take anything for, as they’re not persistent and I feel them in different parts of the head. So right now, I assume they’re from stress, emotions, lack of sleep or even the chemo meds. But all that doesn’t stop me from freaking out about them every once in a while!
snow-drop - lovely to meet you! Thank you for sharing your experience with MOs and how you found the courage to fight for what’s best for you. I’m sorry you had to go through what you did with your first MO. That sounds just awful and beyond unacceptable! I agree with you about the importance of your mental and emotional well-being. We all should feel like a person and not just a number or statistic. I wish you luck on your liver biopsy! I don’t have any experience to share, but please let us know how it goes. I’ll be sending positive thoughts your way!
weninwi - thank you for the positive framing suggestions - great idea! I will be incorporating them as part of my request for consideration haha! There is an online form to fill out to start the process, so I am going to write everything out first and make sure I focus on how this new MO will be able to better support me through all this without speaking negatively about my current one. I think you’re right on the money that perspective will be better received that complaining about the one I have.
Thank you all for being so responsive on here. It truly is making a difference for me. Enjoy the rest of your Sunday ladies!
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Harrow…Thanks for the kind words. Through the years, I often have suspicious spots in my liver, but they are gone with the next CT scan. Yours are too tiny to even biopsy. They missed my 3cm tumor three times.
I have always heard that if your headaches don't go away with Motrin or Tylenol, then it's time to investigate.
You will have pains here and there and will immediatly think that it is the cancer (I've been there too many times to count). But then I remember that I just had a scan 3 months ago, so it is just a sign of aging or whatever. But if I have consistant pains, my onc will order a scan or X-ray. Typically it is just a muscle pain, and I am old at 74. So that happens.
Her2-Somatic is a gene mutation, not genetic. However, my onc was questioning the report from 6 years ago. So that's why he ordered the Guardant and Invitae tests.
I had been on Kadcyla and Faslodex for my chest node recurrence, and attained NED. So I took a 9-month break and was on only Herceptin. But the nodes grew back and that time, Kadcyla did not work. So that is why I had the Foundation One liquid biopsy test that showed that my properties had changed.
And they might have changed back again, which can happen. The fact that they can now test our properties for a change is great news. In the past, when women passed away because their chemos quit working, a test to show what kind of chemo they should have would have made a huge difference.
Hang in there!
Denise
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Harrow, no worries at all. I wish we could go to one doctor for everything. That would be awesome. I also have a urologist and a primary care. It all gets to be so much going to different ones.
And thank you I also hope I get the nurse practitioner more often.
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Hi everyone, I’m still dropping in and out on BCO, just had a PET scan with NEAD results once again. And an echocardiogram with good results, so I continue on PHESGO & anastrozole.
To harrow, I also have bone mets and was told by original MO that of the blood testing results, alkaline phosphotase and calcium are ones to watch as markers of possible progression. The “tumor marker” tests that were mentioned are called CEA, CA15-3 and CA27-29. Those are the ones usually given to BC patients but there are one or two others I’ve heard of also.
Some MO’s do not use them but some give them regularly. My current MO has not done them for me since May of this year. As others have mentioned, they can be inaccurate for some of us.
With bone mets, for me, according to what I have read, PET is the best scan because it can show the metabolic activity and not just the lesions. My doctors have continued to give them over the 6 years I’ve been in treatment so I supposed they agree with me.
BTW, I am also HER2+ and I’ve been on my first line treatment the entire time. I did an initial 6 months of the Taxol and continued on H&P with no progression so far. The only “switch” was from the IV drugs to the injectable PHESGO which is still H&P in injectable form. And I had 2 brain MRI’s during my first 18 months of treatment, results of which were clear of brain mets, and have not had one since because I haven’t had symptoms. Thankfully, there are a lot of effective options for us HER2+ ladies, even when we do see progression.
Hope you can switch to the oncologist you’re more comfortable with, too. Good rapport is so important in the situation we are in and of course you want to feel confident in the doctor’s guidance of your treatment. Best of luck with everything <3
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@olma61 - Congrats with continued NEAD results! It’s very encouraging to see someone with the same subtype be on their first line of treatment for years. Sending all the good vibes that NEAD continues for you.
@denny123 - I always love seeing you chime in, you bring so much inspiration to us newbies here. I hope everything goes smoothly with your lung biopsy and that a good plan will be put in place.
@kbl and @snow-drop I hope Orserdu works wonders for you both! Snow-drop, I did have a liver biopsy at the beginning of this all and it wasn’t too bad. I was also under twilight sedation and don’t remember anything besides when they were done I was very emotional and couldn’t stop crying for some reason. Had pain for a few days but nothing too terrible, I hope all goes well with yours!
@harrow Agree with others about switching if you think you found a better fit! I haven’t switched before so don’t know the ins and outs on that process but agree that you need to feel very confident with who is treating you. My oncologist isn’t known for her “bedside manners” but is known in my city as one of the best and her NP is very very sweet so I feel like I get the best of both worlds with the great knowledge from my oncologist and the hopeful / sweet attitude from my NP. Thinking of you and hope all is going well.
Waving hello to everyone else in this forum, I love seeing it being more active lately.
Not a lot to report on my end. In the middle of cycle 5 of Taxol, excited yet nervous to stop the chemo and go on to maintenance. Will be getting scans after my 6th cycle, hoping to see my liver mets resolved but I had a lottt so we’ll see! My signatera tests have been promising and they did tumor markers for the first time last week which show in normal range but the scans will show the full picture. I’m getting a second opinion through something my employer offers on the 16th, will be a virtual consult. Don’t expect much since I’m on standard of care first line but curious to see their opinion on the trial I’m planning on joining.
Otherwise just thinking about it I want to go on to long term disability, my short term ends Dec 1st. I honestly was super super stressed with my job and had thought about quitting a month before I was diagnosed (and I always question if that level of stress led to this diagnosis but who knows). I had just gotten a promotion which included me learning a lottt more coding and my brain seems too foggy these days to continue with that kind of work. The thought of “retiring” at 29 sounds a bit absurd to me though lol so lots to consider over the next couple of months!
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Jobbibo, I went on LTD for the same reasons and do think living with so much work stress contributed in some way to my cancer, at least by lowering my immune system. After LTD, I medically retired early and make the same as working with my disability plan and SSDI. I was bored and missing coworkers initially but I absolutely love the slower pace. Living with stage IV is my new job and it’s much easier to manage this way.
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@illimae I can definitely see this being a job in itself. I’m leaning towards going on LTD so I’m glad to hear you’ve been happy with that decision. I’ve really enjoyed the slow pace without working so far and if being bored is my biggest issue I think I can manage that!
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@denny123 I’m sorry to hear about the potential of a lung tumour. Please keep us posted about your upcoming lung biopsy. I am sending positive thoughts your way! That’s very interesting that things can change properties like that. I asked the good MO about that for me and she said that it would be rare considering that I am only HER2+. She said if those changes do happen, they are typically seen when there are other properties involved (like HR+) in the original diagnosis as well. Thank you for the reminder about the results of recent scans. I will have to keep that in mind as I move through this process.
@olma61 congratulations on your recent NEAD results! That’s wonderful news. I wish you many more results of the same! Hearing from others who are also HER2+ who are doing well gives me hope, so thank you! The PHESGO injection is not available where I live so I will be on IV H&P in perpetuity, but at least it’ll get down to only 1.5 hours rather than the 3 hours it takes now with the taxol.
@jobbibo I’m glad to hear that while your MO might not have the best bedside manner, they have a reputation of being the best. I would take lots of comfort in that. Plus, the sweet NP is a bonus! It looks like you’re about 6 weeks ahead of me in your treatment. I just had my 3rd treatment on Saturday. I hope your last treatment goes well and that your scans have amazing results! Please let us know. Good luck with your second opinion as well! I hope you get the information you are looking for from them. May I ask what trial you are looking into? I apologize if you have already mentioned it on here.
I was thinking today about my work as well. I was also recently promoted and wonder if I want that stress when I go back. Definitely lots to think about and consider, but you have to do what’s best for you and your health!
I sent in my formal request for a new MO. Hopefully I will get the one I want but at the very least, maybe I won’t be stuck with my original one. Fingers crossed!
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@harrow Thank you so much! Yep the trial is called HER2CLIMB-05, there may be a more official name that I can’t recall. I do know someone in Canada that’s on it currently too. It’s for once you’re done with the initial chemo and going on to maintenance. It gives you a 50/50 chance to add a HER2 drug Tucatinib that does cross the blood brain barrier. Tucatinib is currently approved to be used with a different combo / later line but they’re trialing it for initial maintenance. I’m glad to hear you put in a request for a new MO! I hope you do get who you’re hoping for or at least a better fit.
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Olma - hurray for NEAD! Always worth a celebration!
Jobbibo - I have been very emotional a couple times coming out of full sedation. I mention it to the nurses now. The last time they mentioned some kinds of anesthesia do that (and are maybe less-used now?)
Also, besides the two large liver mets, I also had "numerous" smaller liver mets and reached NED in about 7 mos.
It's interesting to hear about our stress levels before dx. I had A LOT of job stress for 2-3 years before my dx. It had been especially bad the last 6-9 months - largely due to one very toxic beeoch. I can say this, if it hadn't been for her, I'd have been much sadder about retiring. I retired on disability at 57. I had a job that required strong mental focus and memory for policy applications. I don't think there's any way I could have continued to do my job - let alone manage this disease at the same time. I 'consulted' for my friend (who I felt I had left in the lurch) for a little while, until she had a handle on things and didn't need me. ;) Oh, and it took me about a minute to be happy in retirement. Lol
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Harrow-thanks for the kind words. Interesting that your MO thinks that a dx usually only changes if one has more than Her2+. But my onc said that it is possible for my former chest nodes to have been Her2-, and my lung tumor (if it is a tumor), might be Her2+. Sneaky cancer!
Your current treatment should work very well and H with P is a great combo. I am too far advanced for Perjeta.
My onc is very excited about Tucatinib and its efficacy.
Unfortunately, my onc will retire soon. He has kept me alive for almost 22 years so far. But my chemo center has a new onc and he is apparently just like my present onc. I need someone with whom I can have in-depth discussions.
Denise
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seeq and jobbi thanks for sharing this info, my anxiety bar is through the roof
KBL please remember to take Elacestrant in the middle of your meal
I had severe nausea/ vomiting, it was horrible the feeling didn't let me catch my breath my lips turned blue. I had to take sublingual zofran. I had nausea for 2-3 days until today that I made a change taking the pill in the middle of my meal not at the end!
olma, nice to hear from you! yay to NEAD
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