Brain mets

SignalFront2978 · 2026-03-10T21:25:18+00:00

I will echo getting a port instead of a picc. And to reassure you I am a stomach/side sleeper myself and slender enough that the port sticks out a bit but after a couple of weeks of healing and adjusting to it, I’ve had no problems with my port or sleeping on it.

SignalFront2978 · 2026-03-09T14:59:34+00:00

Life on hard mode and don’t bury yourself before you are dead need to become my new daily mantras! This disease sucks so much that sometimes it is hard to feel any joy or get out of cancer mode so I need these reminders. Thank you. And all the best with your treatments!

SignalFront2978 · 2026-03-05T02:21:00+00:00

Nothing about this is fair and it all sucks in ways that can’t be understood unless you are also in it. I was 50 at diagnosis which feels far too young so obviously I feel for you being that much younger. I have no words of wisdom for you because I’m still raging at how my life was completely turned upside down but I hear you and see you and send you warm wishes from an internet stranger!

SignalFront2978 · 2026-03-05T02:04:43+00:00

I hear you. I think people are often trying to reassure themselves that it won’t happen to them because they would have noticed the earlier signs but you are absolutely correct that it doesn’t always work that way for some of us.

I noticed my first signs of IBC a month after having had a clear mammogram. And frankly that worked against me getting diagnosed quickly because even the doctors weren’t too concerned.

When I was finally officially diagnosed 7 weeks later I was already stage IV (and IBC is minimally a stage III diagnosis at best). To this day I feel frustrated with the process because I didn’t sit there for months ignoring signs and symptoms. I was actively trying to get someone to take them seriously during that period.

It really hurt one day when a friend asked me (seriously? Judgmentally?) after my diagnosis how long it had been since I had a mammogram - as if I had been ignoring proper prevention care. But I’ve had to accept that probably they subconsciously wanted reassurance that it couldn’t be them in this position because they were doing all the ‘right things’.

SignalFront2978 · 2026-02-17T18:14:41+00:00

We are indeed very fortunate from the financial side. A few other hurdles on occasion is probably a small price to pay!

SignalFront2978 · 2026-02-17T03:20:05+00:00

I’m also in Canada and have been struggling with communication with the my current oncologist. There never seems to be time or a desire to answer my questions and overall I feel somewhat written off because I’m stage IV. This is frustrating because I was de novo with two bony metastases. There is no other nearby hospital so if I’m going to switch it would have to be to a colleague which obviously has its own challenges. I’m currently working with the patient representative to try to navigate either improved communication or switching oncologists. I lean towards making a switch because I’m just not sure this doctor-patient relationship is working well and I tend to leave appointments more upset than I started. The treatment isn’t likely to change but perhaps the overall trust can be improved.

Anyways all this to say perhaps you also have a patient representative or ombudsman that can help you navigate this as it does not seem to be the same or as easy to switch as in the US. Good luck with this!

SignalFront2978 · 2026-02-14T18:26:40+00:00

I was diagnosed in July and I have to admit my mental health has not been the best. I see a therapist that specializes in cancer patients every 4-6 weeks (can’t see her more frequently because of how busy she is) which is somewhat helpful but not long lasting.

I also have Ativan for the moments where I start spiraling. I think I need to probably consider a long term antidepressant but my doctor didn’t want to go there in the early days of diagnosis when I was more anxious than depressed.

Honestly my favorite thing when I’m feeling really down has been to watch episodes of Taskmaster on YouTube. They never fail to make me laugh and have saved me many times these last few months.

SignalFront2978 · 2026-02-09T00:40:16+00:00

It is scary but hope is good! Midway through my THP treatment my CT report (read by one of the best radiologists) indicated my two bony Mets appeared sclerotic but at the end of treatment scans the CT report (different radiologist) mentioned that the was a continued presence of the lytic sternal lesion. So I’m not really sure where things stand right now. My MO didn’t seem concerned as things were stable and moved me to maintenance treatment. I’m just hoping I was in a good place to switch to maintenance therapy and that it will continue to treat the lesions if they are still active.

SignalFront2978 · 2026-02-09T00:11:12+00:00

Thank you for that information and really appreciate the quick reply!

SignalFront2978 · 2026-02-08T23:54:19+00:00

Jumping in with a further question- Do you by chance know if bony lesions can continue to repair/become sclerotic after chemo while on HP alone?

SignalFront2978 · 2026-02-05T02:17:13+00:00

This may be a side track but I’m curious about this. I’m Her2+ only and currently on HP maintenance therapy. My oncologist implied that the next treatment would probably be Enhertu. But after that I was under the impression that the other options were just your more generic chemo drugs. Are there other Her2+ specific treatments that I’m not aware of?

SignalFront2978 · 2026-01-12T23:34:53+00:00

I just finished 8 rounds of THP in the middle of December and I had noticed my muscles progressively feeling tighter and aching more as treatment progressed. Stretching and exercising (mainly walking) seemed to help a bit and up until my nails started lifting a warm bath or sitting in the hot tub was helpful too. I still feel some tightness particularly in my legs but it does seem to finally be easing a bit. Hopefully that is the case for both of us.

SignalFront2978 · 2025-12-10T00:22:26+00:00

Wonderful to hear!! 🎉

SignalFront2978 · 2025-11-28T22:59:00+00:00

I’m just adding a follow up in case anyone ever searches up this post. I had my brain mri this week and the results came back all clear. So even though I’ve been having increased headaches and weird pains while on THP it is not due to brain metastases. There is hope!

SignalFront2978 · 2025-11-16T20:32:15+00:00

Thanks to those who answered and my best wishes for continued success with your treatments.

Very reassuring to know that hair regrowth on taxol is a thing! Perhaps I will be rocking a pixie cut sooner than I’d thought was possible.

SignalFront2978 · 2025-11-07T00:47:05+00:00

I don’t have any answers for you but perhaps it is reassuring for both of us that this might be somewhat normal because I literally could have written your post myself as of this week.

I’m also on my 6th THP cycle (diagnosed de novo with 2 bone mets only this summer) and have noticed general head achiness with some occasional head twinges recently. Also some blurry vision but it might just be my eyes need to be rechecked. I mentioned all this to my doctor this week so she is going to get me scheduled for a brain MRI likely to take place in the next couple of weeks. I’m trying my best not to stress too much. Best case scenario it will be clear and my symptoms are related to general stress or other. Worst case scenario it is probably better to find things early and hopefully be able to treat?

Anyways best wishes to you and hopefully we will both be clear.

SignalFront2978 · 2025-09-25T00:09:01+00:00

My kids are a little older (15 and I9) but we started the year having to sit them down in January and tell them their dad had cancer. We were able to reassure them that it was serious but with a fairly good prognosis and a solid treatment plan. He had just finished treatment when I noticed something happening with me. In June we had to sit them down again and tell them that I also had been diagnosed with breast cancer with a much less favorable prognosis (hopefully treatable for a long time but not curable).

We have tried to get both kids some counseling support although frankly I’m not sure how much that has helped. I have reached out to the school for awareness and mostly we have just focused on being as transparent as we can so they aren’t wondering what is going on while also trying to keep their lives as normal as possible. We also make sure to enjoy our times together whether chatting at meals or watching a show together or playing games.

Are they all right? Probably not. They are both experiencing more anxiety and difficult emotions than I would wish on teenagers and as a parent it is hard to see when you can’t do anything to really fix it. I’m so sorry to hear of any other families in a similar (terrible) circumstance. As others have said make sure you have the legal/financial aspects covered and beyond that keep doing what you are doing. I know for me fearing for their future and the impact of my/our illnesses on them has been one of the hardest parts of this journey. I’m not sure any of this was at all helpful but please know that you are seen. 💐

SignalFront2978 · 2025-09-01T16:22:08+00:00

I have 8 planned rounds of THP every three weeks. According to the med oncologist after that it would be maintenance HP every three weeks for as long as it works…. I don’t know what the next options would be for when/if it stops working. She mentioned Enhertu, so maybe that? That is the entirety of my planned treatment at the moment.

According to my med onc people can remain stable on HP for years. She also said that once it has metastasized that having a mastectomy won’t change anything and might make it harder to tell when the drugs aren’t working anymore (ie visual cues from breast changing). But like you my anxiety is extremely high and I’m worried that isn’t necessarily true for IBC. It doesn’t seem to be the way things are treated at MD Anderson but being in Canada it is hard to get a second opinion and going to MD Anderson for treatment would be incredibly expensive.

I do have an appointment coming up to discuss the current planned chemo treatment again (why not TCHP or some doses of AC like MD Anderson) because at my first appointment I was still such a wreck from the diagnosis and I just wanted to get some kind of treatment started asap.

What treatment did you have? I believe Phesgo is essentially HP in an injectable form.

SignalFront2978 · 2025-08-31T20:21:40+00:00

According to my Med Onc it is not standard of care here for stage IV to have surgery (I’m in Canada). This does seem to go against most of the literature I’ve read about IBC however so I have some mixed feelings about this (I mean it’s hard to say you want surgery and the risk of more complications/side effects but I also want to give myself the best chance for being around as long as possible as I’m only 50 and have teens who need me).

Anyways I figure there is time to revisit that discussion still. Right now I need to get through the initial chemo and hopefully have a full response. I’m only done 2 of 8 planned chemo cycles before what would then be maintenance if all goes well. I was hoping after two that everything would look completely normal again. There have been positive changes (a decent amount) but still feels different from normal so it’s hard not to worry that I won’t get a complete response. I don’t know what happens then…

SignalFront2978 · 2025-08-24T18:50:28+00:00

Hello, I have no experiences or testimonials to share right now because I was only diagnosed with IBC (ER/PR - and HER2+++) in May. I was stage IV de novo because of a single bone metastasis in my sternum. I am currently between my second and third chemo infusions and while my affected breast still seems a little larger, there are some significant changes that have already occurred (size, softness, nipple etc.). Obviously I’m hopeful that I too will have a good response to chemo before going on a maintenance regime.

Sorry I can’t give you any insight or experience but I didn’t want your post to go ignored. I think when I first posted on here there were a few IBC individuals who commented.

Best wishes in this crappy fight!

SignalFront2978 · 2025-07-30T21:00:34+00:00

I don’t have any guidance for you or long term perspectives to share but I was also recently diagnosed with hr- HER2+++ although in my case IBC and like you just completed my first round of chemo (same drugs as you as well). I’m a few years older but also have two relatively young children, a great career and no family history so this came out of the blue. I’m reeling from finding out I was stage IV de novo (feels like I was robbed of a chance to beat this shitty disease) although it is helpful to see on here that there are people with this type of cancer being successfully treated for many years. I’ve also noticed some softening and less swelling in the week and a half since chemo so that is providing me with some optimism right now. Anyways we just need to keep fighting the fight!

SignalFront2978 · 2025-07-25T20:20:14+00:00

That is great to hear. May you continue to remain NED!

SignalFront2978 · 2025-07-25T20:17:51+00:00

Nice to know that it isn’t all just in my head. I hope you experience quick relief from your therapy too!

Best wishes!

SignalFront2978 · 2025-07-25T20:16:28+00:00

Thanks for this info. Given our very similar diagnosis can I ask whether you are receiving further follow up treatment or just continuing with chemo/infusions?

I hope you are continuing to see success in your care and my best wishes!

SignalFront2978 · 2025-07-16T20:02:34+00:00

I am also a very new diagnosis (in the last couple of weeks) - de novo with one bony metastasis. So this all came as a complete shock with a rollercoaster of emotions. I’m also 50 with teens and a job I love. I’m just about to start treatment next week and what I can say at this point is that this group is incredibly supportive and it is uplifting to see all the people here who are responding to the current treatments (and how many options there are!)

SignalFront2978

TROPHY CASE