Skull mets

[Elle713]

Skull met - does anyone have pain or tenderness with skull mets? If so how long does it last or how frequently?

[awesome4ever]

Hi Elle. I have had skull mets since I was diagnosed in 2018. When I was first told about having mets there I was certain that I could feel them. However once I got out of the initial shock period and informed myself that mets to the skull bone is completely different than having mets to the actual brain I put the thought completely out of my mind and after starting my first line of treatment which was Ibrance/Femara I never felt the skull mets again....so for me it was psychological. However I am not saying that is the case with you...just sharing my own experience. My skull mets were not visible on scans after 6 months of treatment and I generally I get CT(chest, abdomen and pelvis) plus Nuclear bone scan every 3 months which doesn't highlight the skull. For that reason once a year we add the brain to the CT just to be sure. For reference I have very extensive bone mets to every bone in my skeletal system and that was visible on the first diagnostic scan back in 2018 and still all remains present. Take care.

[Elle713 in reply to awesome4ever]

Thank you. I appreciate you reply. I actually felt the ache before they found the met. The brain scan then revealed the met exactly where I felt the achiness. It did pass, after a day or two, but I did feel it again this week. I had about 18 mos on Ibrance/Faslodex with oligometastisis. Now on month 3 of Orserdu. Will see what the upcoming PT scan shows.

Sounds like you have done very well with your treatment. I assume that all of your bone mets have remained stable all this time. Has your treatment shrunk any of them?

[awesome4ever in reply to Elle713]

Thank you Elle. You describe yourself as oligometastis. So am I to understand you previously had one skull met and did the first treatment line and if you are waiting for your PET scan right now what caused you to switch to 2nd line Orserdu several months ago?

Anyway yes I am doing well. Have been on my 2nd line since May last year. Have scans coming up next week.🤞I am stable. Yes all my bone mets( too numerous to mention) are always present. The difference is whether they are active (lytic) or sclerotic. They will never disappear and a few have shrunk but only minimally.

[Elle713 in reply to awesome4ever]

2019 I was stage IIIB. Chemo/ LB Mastectomy/Radiation. I didn’t finish chemo because of an infection. Felt great one year on Anastrazole. 2021 found one small met on pelvic bone. Had that targeted radiated. Went on Ibrance/Faslodex for 18 mos. I paused treatment for a surgery. Next scan showed a met on spine. And now a met on skull showed in brain scan. So … liquid biopsy showed I now gave ESR1 mutation, hence Orserdu - going into month 3 on it with a PT scan coming up end of May.

So yes - oligo - is less than 5 spots. I would like to understand what “treat for cure@ actually represents as I have heard it mentioned numerous times in the oligo group.

What exactly does the oncology team do differently?

[CTGirl1962]

Yes! As a matter of fact, it was one of the first signs my body gave me that the cancer was back, although I didn’t know it at the time. I get bumps that hurt like I just bumped my head. Then they go away. They last anywhere from days to weeks but they’re not too bothersome. They do come and go. It seems like they flare up mostly in the middle of my Ibrance cycle. Like the cancer gets mad!! LOL

Best to you!! 🩷

Jody

[Elle713 in reply to CTGirl1962]

Thanks Jody. As you might imagine, it does freak me out a bit. I felt it before they found it as my body is super sensitive, I knew it was something new, as I’ve never been prone to headaches.

Has anyone ever recommended targeted radiation? Do you get any other symptoms from it? Lightheaded or foggy?

I’ve been told to leave it alone for now unless the achiness becomes persistent.

I’m no longer on Ibrance/Faslodex and have an upcoming PT scan this month.

[CTGirl1962 in reply to Elle713]

Hi Elle!

They do not bother me much. They come and go and I’m at the point in my journey where I hardly realize they’re there!! My doctor isn’t concerned either. I truly believe we are all different in our tolerance. I’m just used to the occurrence of these bumps and they are part of my journey now!! 🙏🏻

Hugs,

Jody

[HelenWi]

I had a skull met in the initial MBC diagnosis, and I did feel a tenderness on that spot — funny, I felt it mostly when I leaned back on my slatted headboard. My first line treatment didn’t work, but once I started on Piqray, the PET scan reports never mentioned the skull met again — but I can still feel tenderness. I do have multiple mets on spine and pelvis that have been stable over the last year with the exception of two new mets last summer that were radiated with cyber knife,

[bubblystream in reply to HelenWi]

Hello Helen

I got the sickest on Piqray the first month. Did you? I have not been sick at all with my my other 5 lines of treatment. I lost 50 pounds on Piqray over the year with no diet or exercise! I wish I was still on it.

Pam

[HelenWi in reply to bubblystream]

Hi Pam,

Oh I’m sorry it made you sick. But at least it worked for a year! Amazingly, I don’t have significant side effects from Piqray. Even my oncologist is surprised. He recently told me “it’s a nasty little pill” for most people but he certainly didn’t tell me that when I started on it. 🤣. I initially had rash and swelling around eyes but both went away and I’m left with loose bowels but not diarrhea. Sometimes I wonder whether it’s Piqray or faslodex that is keeping me stable. Ibrance didn’t work for me so I’m really grateful that Piqray has kept me stable for a little over a year.

Helen

[bubblystream in reply to HelenWi]

It’s amazing how drugs affect us all differently. I don’t get sick easily. Piqray was my 3 rd line. 5 years of Ibrance and no side effects. After one week on Piqray I had a fever, face and body rash, inside mouth completely raw. Could only drink Mc Donals shakes and Alfredo spaghetti. I had an unusual love for cut up apple. Suddenly! Haha. Changed my taste buds to foods tasting unnatural except the couple i mentioned. My normal blood sugars went to 365. I had regular diarrhea. No vomiting since I was barely able to eat. Energy; i normally walk with a zip in my step. I could only walk in slow motion!

I love food especially carbs! All food and restaurants did not call my name anymore! After a month most of this settled down. But blood sugar was high in 160 yo 180 with metformin ( diabetic drug) all year and appetite got better. I am always working to keep my weight down. That year it came off a pound every few days with no help from me. That was my consolation prize. Haha

[bubblystream in reply to bubblystream]

I am glad you are not having the side effects I had. The oncologist did reduce the dose a bit for me. Now I have gained 30 pounds back over the 2 years just eating normally. I do Zumba twice a week. I want to lose 10 to 15 pound. But now it seems taxil and Xeloda seem to cause me to gain weight. Oh well’

[bubblystream in reply to bubblystream]

Helen I smiled reading about your oncologist. Mine never gives the whole story either. They Waite to see how it will affect us first. Now on Xeloda. They tell me that’s a nasty little pill. Haha but I have no side effect except hand and foot syndrome and neuropathy in my feet and fingers. Our body chemistries are soooo individual I hope Piqray lasts a long time for you Pam ☺️

O

[Timtam56 in reply to bubblystream]

Wow Bubblystream. You’re explaining the way I feel about food almost exactly. Except I have a sudden absolute desperate desire to have oranges for some reason. I have lost quite a lot of weight, which is wonderful.

But in reply to the original poster here, Ellie713,…

Yes I have skull Mitz too and have had ever since I was diagnosed in 2018 six years ago. So I was on Ibrance for the first 5.5 years. And now my second line of treatment is Piqray. As far as feeling pain in my skull yes I do on and off. I have some long hair that I have to pull up sometimes and my skull can get very sore so I have to wash my hair every second day or so so it doesn’t way that it feels like it’s pulling on my skull. And if I lean on certain things in a certain way, some of the metastasis hurt. I would say that I can feel where they are. But then that could be psychological because I do know from the x-rays where they are. Who knows?

I hope this helps.

[bubblystream]

Hi! I have extensive skull Mets for 8 years. I have no pain at all. ☺️

[Discocat]

Hi

I have extensive bone mets all over the place including my skull....I've never been shown exactly where in the skull they are, my understanding is that they're peppered all over.

I don't have any pain or bumps but I do get tender patches that feel like someone's pulled my hair....its like a scalp and hair bed thing and it will feel uncomfortable to run my fingers through my hair when I get this.

I usually find wetting my head in cool water helps. I also get weather headaches when the air pressure shifts...these feel achy in my brow bone area....I seem to have developed my own weather forecasting system🤣🤣

I've been 3yrs since de novo diagnosis on Ibrance,Zoladex,Femara and Zometa.

So far all stable with the primary breast tumour now shrunken to almost indistinguishable in scans....have scans coming up in a few months ....in beginning of July.

[Elle713 in reply to Discocat]

Do you take anything for the aches and headaches that helps?

[Discocat in reply to Elle713]

I don't take any pain killers.... my oncologist told me to try to avoid any extra medication...even over the counter stuff. I had issues with my liver enzymes skyrocketing on my first treatment (Kisqali). So far liver enzymes have been fine on Ibrance but my oncologist is against any extra load being put on my liver function. So I don't even take any paracetamol.

[TammyCross]

I have bumps and lumps in several places on my skull. One doc suggested I just have a misshapen skull! I would have noticed that washing my hair all my life.

Then I got one in front that descends below my bangs. Definitely new.

PET/CT showed nothing! So it seems I have some other disease that causes these. They are a little sore at first, then they just sit there. They don't go away.

[Elle713 in reply to TammyCross]

I love when doctors make you think you’re imagining something. I tell them Im 63 and have lived in this body my whole life… if I tell you it’s new - it is! I was fortunate to have nothing at all - not an ache, pain, headache, my whole life. Until MBC. Even then… I felt nothing when first diagnosed.

The drugs and treatments is what I have felt and had reactions to. Now - I really do not feel like myself. Mentally exhausted - I feel like a professional patient. Physically just kind of worn out. The drugs certainly accelerate the aging process. My mother was 94 and my grandmother was almost 100. Neither of them had cancer… but they did have arthritis very bad.

They could run circles around me at 63. Tge drugs deteriorate us.

[bubblystream in reply to Elle713]

I agree Elle. I have same experience as you. Very healthy. No symptoms. Diagnosed de novo at age 62. Now I am 70. No effects from cancer itself. Just living with side effects of the drugs. I like how you say you are a professional patient! Me too! 🤣

[Elle713]

Thanks Tammy.

[Widdershins3]

So thankful for the timing of this thread--I've been increasingly worried about a weird hard lump on the top of my head that isn't from an accidental knock. It showed up about 2 weeks ago and I've never had anything like it. I can't recall seeing any scans that were of my skull...which is a bit weird to me, after having so many, many kinds of scans.

I have many other bone mets that are watched carefully--PET scans at the moment and after stereotactic brain surgery for some tiny tumors, I also get Head MRI's. Would this new bump be likely to show up on the latter? I've never been shown one of that type of scan, so I'll message the surgeon tomorrow and ask if he could recheck my head scans, if possible.

Thank you to all the posters who've helped me to settle myself down--I was really scared by the lump before I found this thread.

[Elle713 in reply to Widdershins3]

My PT scans do are mid thigh to base of skull. Brain MRI found the met. I hate that I can feel it, but this thread has been comforting and reassuring. Yes, get an MRI set up. If it’s been a while. Better to know.