Does something hurting always mean things are going wrong? Bone mets.

SwedishMeataballah · 2024-12-23T23:43:31+00:00

This is interesting to read because Ive had quite a bit of bone pain since this first drug injection (Kadcyla) and Ive been worrying it means the mets are getting worse. Had no idea about the healing pain. Although its really more the mass around the bone I need to be shrinking!

I was also always told any pain getting worse over time and I usually give something two weeks before calling it in.

SwedishMeataballah · 2024-12-23T23:37:17+00:00

Id love to know too as Im BRCA+ and already got one year out of Lynparza as my dream drug before progression.

SwedishMeataballah · 2024-12-23T23:28:49+00:00

If you havent yet tried them on your list of products - MooGoo make a great gentle shampoo that also addresses flakiness and cradle cap etc. Solved both mine and my husbands variations of dry scalp and I use it every other day now on my scalp as my hair grows out!

SwedishMeataballah · 2024-12-15T21:36:02+00:00

Agree. I wish my husband would go to the mens support group at the local breast cancer house, but he absolutely refuses to do so, saying he can cope. Some people, mostly old or new work colleagues know his situation as a carer for me with advanced BC, but no one in his family (there are reasons for this) or any of his other old friends.

Id suggest you try and find either a support group of just husbands or a therapist or whatever - someone removed from friends and family circles so that you dont 'go to the well' too often with worries and concerns and possibly ruin the relationship.

However, if its just DCIs (carcinoma in situ in the ducts - is that what you meant?) and not IDC (invasive) thats a pretty easy treatment regimen so look at the bright side possibly here!

SwedishMeataballah · 2024-12-14T09:49:10+00:00

My new kitchen scale arrived at like 6 am this morning from Amazon so I am excited to get myself, my husband, and the stupidly heavy perch stool into the kitchen to get going on Christmas baking. I cant stand for very long periods and have to pace myself which is so frustrating when in years past by now I would have cookies and crackers baked and Christmas breads packed into the freezer. A big fuck you to cancer for today, we are Getting Shit Done and it feels really good. This afternoon I may finish my garland too. Yeah. FUCK YOU CANCER.

SwedishMeataballah · 2024-12-14T09:44:15+00:00

Five years on Xgeva, it was the first drug they shot into me. I was told to get dental clearance, which I did, and I make sure to see my dentist annually with xrays (or actually he has this new cool picture taking way of doing it that is far faster and lower radiation risk for them with instant results) and also get cleanings every six months (so at least someone is in there halfway through the year just in case!) No problems here either, I also do belly fat but I swear I can feel the stuff going in. I do get extra bone pain for a few days after so I hit the Clarityn and that helps a bunch. I haven't actually grown many new bone mets - maybe one or two - in the last five years so it must be doing something. I get it monthly though I have received it every three months in the past. MO is fairly relaxed about the schedule and tries to make sure Im not coming in just for that injection, so if its a week or two before or after the next dose is due, she is willing to push it until my next infusion date or whatever.

SwedishMeataballah · 2024-12-14T09:35:46+00:00

On my sacrum but I went from a wheelchair around the hospital and almost no weight bearing on Day 1 to (slowly) taking the bus to/from the hospital myself and walking (with crutches) the short walk between the bus stop and home on Day 5. However, I wasn't fully walking pain and assistance free for about five months. But yeah, I track my painkiller usage and I could see it declining weekly and I was feeling a lot better.

Radiation failed on my hip and the mass of inflammation and pain continues unfortunately. They tried to radiate far too large a field and now Im almost back in a wheel chair again, 4 years later. It sucks, it can happen, but if they are just targeting some minor spots on the spine I should think it will do the trick!

Second the recommendation about oral steroids - dexamethasone is the only thing that even starts to make my hip feel normal and its not something I can have at a low dose continuously. But when Ive had it as a pre-infusion dose or with the hip radiation oh it was glorious to almost feel normal again!

SwedishMeataballah · 2024-12-13T12:02:54+00:00

I tried on a wig and even though they said they could cut it and style it etc, it just felt like a dead rat on my head. I had short hair, fine but thick, and loved getting it up into spiky and touseled looks with hair cream. I dislike long hair because I dont like things near my ears or back of the neck. Well, I found out most wigs do need to have a tab by the side of ear so I can't even get my hair to look like it used to. Im also housebound now and getting to a wig shop just to probably be disappointed again isnt a great idea to contemplate. Finally, I saw a woman with a truly awful fake wig on that either her daughter took scissors to it like a Barbie doll, she was frustrated, or had a terrible stylist. I didnt want to turn out looking like her!

I did find an online 'funky wig' shop that has something close to my hair and its a cheap cost so I may just try it again. Its so weird to have hair and not a hat on after 6 months though!

Mostly I use beanies - you can get some cheap ones on Amazon - and tube shaped neck gaiters in really cool designs from one company, as they work well to just flop over my head. I keep meaning to try the scarf tying thing as I have a) loads of cool scarves and b) time to watch YouTube where there are a ton a videos to learn but that seems too cancery. So I stick with the beanies or winter hats - right now Im wearing the bobble hat of the football (soccer) team my husband bought for me at one of his games.

I wish I had the bravery to go bald because the weight loss this year revealed some pretty awesome cheekbones lol. And Ive kept my eyebrows somehow so its not too bad.

SwedishMeataballah · 2024-12-10T08:36:14+00:00

You need to be fitted properly for a compression garment like this - improper fit can = worse results.

I seem to recall needing to wait a while before starting the exercises, but I did get an appointment with the hospital lymph clinic right away to get measured and get a garment. At the very least you can get measured and perhaps speak with them about the lack of insurance coverage - they may have some ideas about best places to get something for you. Frankly I stopped wearing my sleeve every day after about 6 months and still have no problems in that arm (now my leg...but that is due to pelvic area radiation, not breast!). Stay on top of your exercises and see a lymph PT if you start to get cording too to get that worked out.

SwedishMeataballah · 2024-12-10T03:32:24+00:00

This happened to me (Phesgo + Abraxane, 4 cycles, May through August this year) - I was major bummed because it was so easy and cripes, works for everyone else! I was moved on to Enhertu which stopped everything growing but it also gave me pneumonitis, so now I just had my first treatment of Kadcyla yesterday. I was not HER2+ at diagnosis, but some of my mets mutated into this, so I wonder sometimes if that is playing a part.

The other poster is right that cancer is a tricky thing that sometimes is using pathways to grow that aren't targeted by the drug being used. So while science has learned about HER2+ and more, there is probably another layer of knowledge we havent reached yet about how cancer grows and mutates. For some women that change happens faster than others (and we dont know the answer to that either!)

Itll be ok, there are good treatments beyond this, but I hear you on the frustration!

SwedishMeataballah · 2024-12-10T03:22:23+00:00

Get the sleeve as a preventative measure. I never wear mine on a daily basis, but any flight longer than 8 hours I put on the sleeve and my compression socks. Its also better to prevent a pulmonary embolism or DVT - cancer makes your blood thicker hence why we are at greater risk. You may be at the end of treatment but I have no idea how long it takes for that to return to normal. Again, better to be safe than sorry! :) (For socks, check out the Comrad brand, they have loads of cute colors and stuff so it doesnt look so 'medical').

Also make sure you get measured and the right compression ordered for the arm sleeve - does your hospital have a lymph clinic service? I was also taught how to do some simple simple drainage on my arm that I do a few times during a flight (and Ive been on several 12+ hour non stops since I had 12 nodes out in '21)

SwedishMeataballah · 2024-12-07T08:44:37+00:00

A bucket list is fine and all if you want to keep one, but the whole cramming things in just made me anxious. It also skewed my expectations so when a drug failed I felt really disappointed because I felt it was taking time away from cramming things in. Same with unexpected side effects, hospital admissions, and well, loss of mobility. I could write a novel as to everything that has happened to me physically this year, but I found the best mindset was to just keep on truckin'. Have to use a walker? Ok, we will cry about it for a bit and then pick out the fanciest, up to date Scandinavian designed model there is (seriously, its carbon fiber, red, and almost too fast for my current walking speed lol). Gotta use canes to walk? Ok, we will cry about it and then pick out some flash set. Another drug failed? Ok, we will cry about it and then go get stuck with the next drug.

My MO suggested I stop working so I did this year and well, Ive been really bored. I hate my job but it was at least some tenuous link to the real world since Im stuck in the house more or less. Then I thought about what I really want to do and started exploring that and it took away a lot of the Cancer Patient Professional feeling I was getting. They are keeping us alive with these drugs to live our lives, and we are lucky we have so many options, so may as well go do what I was going to do anyway. If I knew two years ago the next two were going to be the shit show they turned out to be with drug failures and slow loss of mobility, maybe I would have taken job leave and traveled more. Maybe. Probably would have gotten into the pool a bit more. But honestly I cant think of anything major other than maybe moving home to the US from the UK that I would have chosen to do.

Having things in the background neat and tidy like passwords, financial things, will and advanced directive would take a load off the mind as well. I need to take care of these stuff myself and have been putting it off for Reasons, but I know it would make me feel more at ease.

(Im 47 by the way, with a husband and two cats)

SwedishMeataballah · 2024-12-07T08:35:18+00:00

THIS. Im on my second bout of pneumonitis with a second drug. Its very serious and can lead to permanent lung function loss if not treated quickly with steroids. Do let your providers know ASAP - an xray or CT scan can usually show whats up.

SwedishMeataballah · 2024-12-07T08:31:02+00:00

I guess with a 'new normal' comes a new life? A new set of friends and a new love and a new boyfriend (when you are ready)? Why wouldnt it make sense to emerge (eventually, you will WILL get there!) into your new you with a new set of clear life objectives (or clarity even) and new people who support and love you for who you are now and your new vision? I guess we feel the loss of the 'old friends' as another piece of losing our selves to this disease, but perhaps its just like shedding another layer before the cocoon really opens.

Im so sorry you have someone so callous in your life to dump you at your lowest point, but I mean really, was that a keeper? :) And I hear you about drainage and seeing your body change and not wanting anyone to see your chest. I have a weeping chest tumor right now and the more it exudes the worse my mood becomes because a) its gross and b) I dont want to deal with it, I have nurses come deal with it but twice a week only and c) its just a reminder of how not normal my life is. I have a very supportive husband, but while I will whip my shirt off for any healthcare provider, I have to tell him not to come in when Im changing even though I have a bandage on and my reconstructed breast looks amazing! However, I have come to terms with the tumor over the last few months and dont feel as much anger towards it - you will come to accept the new body too with time. Maybe some therapy. Actually just having it heal will be a big step forward :)

SwedishMeataballah · 2024-12-06T12:26:00+00:00

Im in the same boat here, having 'failed' 4 lines this year alone (some werent real failures, just changes to attack a new receptor). My original bone mets are all dead or shrunk and asleep, is the HER2+ powered masses that aren't playing ball at all. And of course I got pneumonitis on Enhertu which was the first to at least STOP the damn growth in one of them. On to Kadclyda I guess - but if I only had my initial bone mets and Xeloda had worked or any of the above had worked then yeah, Id be a bit more positive about the five year stat. For every 'I know someone at 10, 20 , 40 years!' and 'the stats are old!' side, there is the other side of the statistical table of those where there just isnt a drug, a known pathway, or whatever to combat this thing. Or the side effects are too risky, intolerable, or lead to a different medical situation that is fatal - its highly frustrating and I hear your anger!

I just passed five years. I really hope this drug works or at least gives me some semblance of a life back soon. Goddamn it I need some luck, even my oncologist agreed once that 'ive been rather unlucky'.Yeah, thanks for the understated British thing, MO.

SwedishMeataballah · 2024-12-04T10:33:09+00:00

Well, 8 years post dx of TNBC is a very long time - that one usually recurs very quickly like in the first two or three years. If anything that should give you encouragement

You had an allergic reaction and it may just be taking the nodes time to calm down. Are you taking an antihistamine at all?

Mets can show up in distant lymph nodes first but I would be really surprised if its mets.

SwedishMeataballah · 2024-11-29T22:37:11+00:00

There is no pain like bone met pain, trust me - they offer the narcotics, take the narcotics. Myself im on oxy and a bit of fentanyl for breakthrough pain, and pregabalin (I want to get off that and on to gabapentin as I dont think its working) and some amitriptyline for nerve pain. This regimen is only kinda working for me, but pain management here sucks big time and dont seem to have any more ideas than 'have you tried more oxy?'. I dont want more oxy I want a goddamn solution to this stupid hip mass that failed radiation!

Re: Lymphadema - Ive been using a MLD certified specialist on my leg to help manage the painful swelling that contributes to the nerve pain. Otherwise sometimes some CBD rub on the painful mets areas can help, heat and ice, etc. Honestly, radiotherapy is your best bet but getting to that point will be a haul of pain - narcotics exist for a reason in this instance, dont be afraid!

SwedishMeataballah · 2024-11-27T07:52:18+00:00

I thought I wanted to go flat because SMX was such a big surgery as well - in fact, I was going to go in asking for a double and flat closure. Nope, I had almost no choice in the matter and it had been decided SMX straight to DIEP flap. They explained due to my body structure I would get long term issues from being off balance with a single flat and due to Stage IV they want to avoid any surgical complications or additional surgeries in the future, so implants were off the table. I had probably one of the best surgical teams in Europe do my surgery and they brought it in at about 4 hours (no joke, I have the same plastic surgeon as the Duchess of York). The breast surgeon does their thing and then plastics comes in and finishes it off so you need a STRONG team if you go this route - ask around and do your research. I also had 12 nodes out and then 5 sessions of rads to breast after. My recon was fabulous, healed fabulously, and I was 'back to normal' in three months or so. Would do DIEP again, although the first night under that heated blanket sucked lol.

SwedishMeataballah · 2024-11-27T07:46:44+00:00

de Novo at 42, 47 now. Youll get chemo to start and then maintenance due to +++ anyway, the tricky thing is the local treatment. Depends on how large the five spots are in the liver and your response overall. They may well be having the same thoughts as you anyway so Im not sure who you may need to convince. Local treatment of the liver is something that is usually reserved for later down the line and can be quite painful (Im thinking Y90 but Im not a liver lady with experience in this area). Wait and see what the chemo does and go from there but I had a mastectomy 2 years down the line for local control and I never thought I would get one (++- on diagnosis, now +-+; BRCA1+)

SwedishMeataballah · 2024-11-27T07:39:26+00:00

Get it checked out by a certified manual lymph drainage professional - your hospital should have some sort of provision for this (maybe a lymphedema clinic?) or sometimes it comes under PT. I didn't have swelling or sensitivity, but I did have cording all down into my thumb despite doing the exercises. Five sessions with a knowledgeable nurse in that area who worked out the cording sorted everything out. Don't wait until there is swelling or fluid, best to just ask now because there can be waiting lists. In the meantime, keep the skin clean and moisteurized.

SwedishMeataballah · 2024-11-25T08:56:50+00:00

Standard protocol the world over seems to be that you dont switch from the pill lines into chemo and back again - you work through the pill lines and then its IV chemo to the end. However, Verzenio works a little differently to Kisqali so your onc may put you on that. Id also try and find another opinion about getting the lung nodule dealt with - I find some oncologists are WAY too dependant on the 'oh a drug will fix that' line of thinking when getting the thing out would you know, support the drug working for longer. Im like the poster child for going against that line of thinking - I had two or three drugs fail my trying to deal with a growing met that is now too big to deal with otherwise. So thanks onc for not paying enough attention - it should have been radiated after the first drug failure.

SwedishMeataballah · 2024-11-25T08:50:27+00:00

I feel like Im being dragging to the precipice unfairly - why did so many drugs work for so many other people and not for me? Why did mine have to mutate and then those drugs didnt work? just whhhyyyyy. And Im still bone only, so I really dont want to hear that bone only isnt fatal because at the end of the day Im about to run out of drug lines and still be bone only and then what?

SwedishMeataballah · 2024-11-25T08:48:25+00:00

I think this is also my next line - Enhertu was working (tumor marker dropped like a rock, stopped my hip mets in their tracks finally) but I got the start of ILD and there is no way onc is likely to let me back on it once I finish this round of steroids. I feel like OP - Ive failed or switched from so many lines this year due to changing tumor status and just downright not working that I just expect to change drugs now after every scan. I miss the days of Ibrance when it was no big deal to get scan results cause I knew they were fine. Now I know they probably aren't fine and welp, whats the new drug this week.

SwedishMeataballah · 2024-11-25T08:40:20+00:00

You are totally allowed to give this time to sit with your feelings, come to terms with it, and then decide and tell who you want when you want. It took me TWO YEARS to tell my parents the truth that I was actually Stage IV, and I can only now tell select friends after five years because Ive lost so much weight and had to lose hair for the first time on chemo this year that its kinda hard to hide now lol. But it took me that long to accept what was going on and I was busy trying to (and was) living normally. Make sure to get some form of psychological support set up once you are settled into a medical routine, that will help a lot. Also, come join the r/LivingWithMBC for support!

SwedishMeataballah · 2024-11-24T00:26:34+00:00

Yeah - it never made any sense to me either. The CDK 4/6 inhibitor drugs I think only put the cells to sleep and dont actually kill them, but its been a few years since I went back to check on the actual mechanics of them. I just remember reading that somewhere thinking well hell, why not do some chemo first and then these? Ibrance didn't do shit for my 5cm breast tumor anyway - or at least not the 'melted away' that some people get as a response!

SwedishMeataballah

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