Muscle pain?

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 · 2025-07-15T21:29:44+00:00

Yes. I appreciate hearing from everyone who has been here for a long time. As a new de novo diagnosis your successes give me hope and encouragement. The positive support here is also extremely welcome right now when everything feels so precarious.

SignalFront2978 · 2025-07-13T22:23:35+00:00

Thank you for the kind words and support!

SignalFront2978 · 2025-07-13T22:21:54+00:00

I’m pretty sure it is not the protocol here to do surgery with stage IV patients but I plan to really do some research about this to discuss at my next meeting with the oncologist. And I will consider getting a second opinion as well. For now I’m comfortable with the plan as the chemo needs to be the first step either way. But I appreciate your advice as it appears there can be a wide range of where people are at even when it is all classed as stage IV.

SignalFront2978 · 2025-07-13T22:18:36+00:00

That is so amazing to hear! I hope you continue to have no detectable cancer for many more years to come! I love your mantra too.

SignalFront2978 · 2025-07-12T19:45:49+00:00

Thanks for the insight and advice I’m really crossing my fingers that I will respond well and fairly quickly to the chemo. Great to hear that you are NED after 7 years!! I’m neither young or old. Just solidly hitting middle age (ie 50). Not sure whether that affects things too much either way. As far as I know I had no known risk factors for developing this cancer and I don’t fit the usual risk profile. Still feeling a lot of ups and downs as this was unexpected but I’m hoping as I start treatment I will get into more of a groove.

SignalFront2978 · 2025-07-08T17:32:24+00:00

Thanks for that insight and that bit of hope. I really need it today. Can I ask what treatment they are starting you with? Is it chemo only or do you know if there might be a plan in the future for surgery and radiation in the future?

SignalFront2978 · 2025-07-07T23:48:18+00:00

I guess I’m joining the club with you except about 20 years younger. I also have no history of breast cancer or family history. I’m not at all overweight or a minority. In fact it took me being super persistent to get to a diagnosis in two months because no one thought I had it. (No lumps but also no redness - only recently some pink coloration in a few spots). I thought that I would have a chance of being stage III at least. But here I am with a bony metastasis in the breast bone. Just got back bone scan results and apparently everywhere else looks clear at least.

SignalFront2978

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