If my scans show stability, why do I feel like my health continues to decline?

[GramorNonna]

In general other women that have continuing issues with medications, and struggle with declining health. It's hard for me to determine if it's cancer, aging or side effects from meds.

[Kateds]

it could be any of those things contributing to how you feel. I’ve been on Ibrance and letrozole for six and a half years and my health seems to go up and down even though I’ve been stable the whole time. I blame it on side effects and aging. I just feel so blessed to be here that I try not to think about it too much. But the fatigue and the other annoying side effects are very real. Let’s face it, stage four is hard. Sharing in the collective pain,

Kate

[Ticket123]

Hello! I also struggle with figuring out what symptom is from what. I have never gotten back to feeling as good as I did pre cancer. it’s definitely tough . That being said I am lucky that I can still do a lot of things that bring me joy. When I get too wrapped up in it all ( which I am quite apt to) I try to go do something that makes me feel good and that I enjoyed before this whole MBC adventure. Some kind of exercise usually helps me. Take care. Carla

[fancydog in reply to Ticket123]

I am 64 and I feel that the MBC has sped up the aging process in me, and have read that in layman's terms the cancer itself causes this. My recent scans were clear but for the first time they documented Lumbar Stenosis of L4 and L5, vertebra look great but now I know why being on my feet for more than an hr or 2 causes lower back pain, rt hip has begun to hurt some too and scan showed a lytic spot there so Voltaren gel has become my friend. I have had degenerative shoulder issues since before MBC and 3 surgeries to them, go to the Orthopedist for steroid shots to those. I love exercising outside and go to a local town park. I walk at a casual pace, no counting steps, laps, no fit bit! Stretch before and after and feel great afterwards

[Ticket123 in reply to fancydog]

I agree that doing stuff outside is helpful! I used to be a step counter but now just want to enjoy.

[Aquadog]

Same here. I'm also 67 and after 6 years on Ibrance, letrozole, and Xgeva, I feel so much worse than I did before diagnosis (pain and fatigue). I suspect it's mostly from the drugs because I've had no progression and no one can find anything wrong yet I can barely climb stairs, I hobble not walk, sitting is uncomfortable (especially getting up - someone comes in and shortens my hip flexors while I'm watching The Last of Us), and my legs hurt if I try to sleep in any position other than flat on my back. I'll keep researching to find out what will work for me because I'm not done yet and there's got to be answers out there somewhere!

[Crazycocker in reply to Aquadog]

auqadog, I think you’ve just described me! Only I’m 51 and been on the pabociclib, letrozole combo with zoladex and denosumab injections for nearly 3 years. I have just had a ct scan, spine mri and nuclear bone scan, hoping to find out what’s causing what! I’m thinking it’s lack of hormones?

[Aquadog in reply to Crazycocker]

Lack of hormones - that’s my guess, too. I had a nuclear bone scan two weeks ago (showed nothing amiss), X-rays several times (all’s well in that regard) and am scheduled for a spine MRI on Feb. 21. Maybe something will send up warning flares besides my complaints about pain which can’t be diagnosed. We need a hormone replacement that cancer hates and our bodies love. Let’s get the pharmaceutical companies to work on that! Sending hugs.

[Crazycocker in reply to Aquadog]

your bang on, I’ve been researching into soya and cbd, and I’ve been told acupuncture helps? It’s a trade off I know, but I’m fed up of people saying, ahh it’s the menopause, we all go through it and it will pass. I’ve given up trying to explain! Don’t get me wrong, I’m so happy that the drug combo is working and I’m still here to moan about the pain, but it would nice if just for one day not to think about it. Good luck with your MRI and sending hugs right back

[wendle3007 in reply to Crazycocker]

I'm on the same combination as you and agree that it's the lack of oestrogen which causes the pain and stiffness which dominates my life. I have had some additional scans done following a referral to rheumatology so I'm hoping for something positive from them. I've also been referred to physio and currently doing exercises to strengthen my core and back muscles which became saggy from sitting around not doing much during chemo/surgery/radio- they don't warn us about that do they?!

[Crazycocker in reply to wendle3007]

the combination of drugs is definitely the cause. I feel there has to be a level that our bodies will function on that won’t interfere with the cancer. I have remained active, and walked my dogs and have only missed the very odd day, and I have to admit I am better when I’m up and about. Evenings are the worse, when I’m sat. No they don’t warn us, but then we have to allow some time to let our bodies recover too, it’s all a balance. I do laugh when they say go exercise, because I am rubbish at exercising alone, so yes exercise, but don’t run as you are a fracture risk, don’t go to a swimming pool/gym because you are immune suppressed, so how! 😂 I have to say I have spent the last 3 years completely confused, and they say it’s brain fog! 🤔😂

[wendle3007 in reply to Crazycocker]

I've just come back from meeting with my oncologist and we discussed the physio exercises. He has actually recommended me to go swimming because he thinks it will be beneficial. I really don't understand why you can't go swimming due to immunity - the pools are chlorinated so you'll never be cleaner! 😂

[Crazycocker in reply to wendle3007]

my neutrophils always go so low and hardly go above 1.0 m, it always takes me 3 weeks to recover. So I am on a 3 week on and 3 week off cycle. I’ve was told that the pool is a breeding ground as it is wet and warm, pool side and changing areas? So I don’t go!

[Dragonfly2 in reply to Crazycocker]

dear Cc! The neutropenia can really undermine your health and actually make it difficult to participate in activities that expose you to germs and bacteria…on this site we’ve been discussing alternative dosing of IBrance , 5 days on and 2 days off, with no breaks. I follow this and avoid the debilitating neutropenia, which gives me more energy to be active and not so vulnerable to illness.

practiceupdate.com/content/...

Best wishes!

[Crazycocker in reply to Dragonfly2]

Hi Dragonfly2

Thank you, Yes I have been reading a lot of people are on the 5 day in 2 day off cycle. I think that is mainly in the US? I’m in the uk I don’t think it’s something that is done? I was going to speak with my consultant next week as I would feel a lot more confident if I could stop the rollercoaster ups and downs

[sancarlos]

I have been saying that same every day!! They took me off Ibrance for 3 months and I thought I was going to be back to normal 🤣The only thing that improved was my “brain fog”!! Going on 5 years, so I am happy to be here!!

[life8888]

Exercise exercise exercise! Even if you're in a wheel chair, leg pumps, arm pumps, or some other activity to strengthen or raise your heart rate should be done every day! If you can get a script for physical therapy, that's the best, because it forces you to be active. Use it or lose it.

[Dragonfly2]

your thoughts are mine as well… is it the cancer, the drugs or aging.? My onc said that since I’m stable the biggest impact is the anastrozole which “ages” your body at top speed. When I’m active walking and playing golf I feel my best… but that’s also during warmer weather. Realistically we expect lots of changes in the 70s so it’s accelerated for sure. I’m just glad I can do as much as I can and enjoy friends and family. Stay positive and enjoy what you can !🥰