Changing treatment, had 12 months out of Kadcyla

Hi all,

Not posted for a while, since having covid over Christmas I've had unbearable back pain, taking pain relief daily. Recent CT doesn't show any change to my bone mets, no nerves are being pinched either so onc can't attribute it to that, however the CT does show a 1cm progression in 1 of the liver lesions and tumour markers are slowly drifting upwards.

I am having a brain MRI next week to check whether the mets are still stable after WBRT I had in November. If they are stable I will be starting enhertu, if they aren't then I'm going on tucatanib which has just been approved for use on NHS and will be first person at my hospital to have it (scary thought).

What I'm wanting to know is, do any of you suffer with this horrendous back pain. It can be like a dull ache or feel throbbing. It's constant and daily, pain relief now only really takes the edge off.

Recently prescribed codeine but doesn't touch it, to be used with paracetamol.

Can't tolerate tramadol and morphine doesn't appeal to me.

I'm just coming off kadcyla, I'm on letrozole and have 3 monthly zometa.

It literally is sudden onset pain and I have had some numb sensations on affected left side. Neuropathy maybe?

Look forward to your replies and Hope you're as well as can be.

X

[debbiedo2063]

Hi When I was diagnosed with MBC in Nov 2020 the symptom I had was throbbing back pain in the base of the spine area. I did not sit down for 6 weeks literally , no sleep just floor pacing, and I was getting numbness around the anal area. No pain killers would touch it. Doc kept giving me tramadol and I kept vomiting with it. It was only when I went to a physio he said the pain I describe needs urgently investigating and sent me next day for MRI.

I had 4 emergency radiotherapy sessions 2 days later, which really helped . I find now that the pain is prone to come back but not as bad if I don’t exercise daily. I have bone mets in the sacrum area as well as other places.

I have had Covid last 2 weeks and the back pain came back and caused a sciatica type pain awful and numb, but it’s going now I’m recovering.

CT scans so far show no progression on Ibrance.

The pain I experience at times is deep, gnawing like toothache in the back.

I hope you get some relief soon from it, the only thing that helps mine as I say is exercise I.e. a long walk and a swim . I take 1 codine and 1 paracetamol together if it gets bad seems to help but not as much as swimming and walking.

Take care

Debra

😍xxx

[Hidden in reply to debbiedo2063]

Thanks for replying, can I just clarify that your MBC was discovered through the MRI due to having back pain?I didn't realise I had it in my spine, positive its never been mentioned to me and I'm a fixator for details. But when I sat with onc after CT last week, you can see it and apparently its been there since diagnosis but hasn't changed hence why he can't suddenly attribute my pain to that although I suppose it could be.

[debbiedo2063 in reply to Hidden]

HiYes , the MRI confirmed MBC. I had no idea , it was a shocker as my GP kept saying it was prob a disc or something and kept prescribing stronger painkillers over the phone as it was lockdown.

I self referred to the Physio and he asked about my history, when I said I had Breast Cancer twice in last 10 years he said MRI tomorrow.

I was so grateful to him, apparently been a physio for 37 years and when I described the pain he knew it could be in the spine.

They did an additional CT as well as radiotherapy within a week and I had it in pleura, hip, iliac, rib. They then did a biopsy on the pleura the next week to ensure it was the same breast cancer.

The pain was horrendous in the back, nothing would touch it. I hope you can get some relief soon as it takes over your life doesn’t it if it’s so bad .

If it’s in your spine I would think the pain could be coming from there , im not sure if MRI would show up more that’s how mine was diagnosed .?

Debra xxx😍

[Itisfinished in reply to Hidden]

If its pressing on vertebraes it most certainly can cause pain. In August of 2020 I had to have a tumor removed from my spine because it was crushing 2 of my vertebraes and affecting my legs and walking. I was in horrific pain. However after they were removed I had that area radiated and started on Ibrance and Letrozole. I am walking again and I only take 1 oxycodone in the morning I got off all other pain meds and Gabapentin. I am in the process of getting off the oxy now. When I first got diagnosed the oncologist didnt tell me where all my mets were I didnt find out everything until I ended up at Chapel Hill Cancer Hospital for Women. Just sharing my story. We are all on a different journey however you can trust God to direct your steps. Just ask Him and He will answer! Praying for you friend 🙏

[AvidBooklover]

This may, or may not help. My MBC was one tumor in my hip. Before this was diagnosed I saw spine doctors, and they thought it was a disc issue, as there is degeneration there. One day I walked up out of the subway in New York and I literally was frozen there. Something just locked up, I was in the worst pain. The spine team gave me a pill that worked well. Ends up it was 4 Nuprin and one Pepcid AC. Insane.

After diagnosis and three very targeted rad sessions, slowly numbness started to progress for me down my leg. And with that came nerve pain. I was put on Gabapentin and it has been a huge help. And for neuropathy in my foot, I am taking a low dose of Cymbalta at night.

I am better on the days I work out for an hour on my recumbent bike or stretch. Simple yoga helps a lot too. If things are tight, it can alleviate a lot of the tightness this way. I also have deep tissue massages, with stretch sessions that help unwind me enormously. If you have someone good, who really can understand your body, this can help.

This may, or may not make sense for you. I hope you feel better soon. That searing pain is just awful!

[morty87]

I had terrible back pain after taking a fall while skiing. It was determined that I had 2 compressed fractures in my spine that were caused by a lesion. I had extensive back surgery and radiation. I've been on Ibrance and Letrozole since January 2018 with good results. I found on my own that a daily Claritin helps with bone pain (and my allergies too). I also take Neurotin for neuropathy but I can't tell you that I see much improvement with it. I do take it as bedtime as that is when I am more prone to have the burning in my feet. Good luck.

[mariootsi]

Omg. You have been through so much. Hope you can get some relief.

[Hidden]

Hi I have been prescribed slow release hydromorphone 3mg and 1 mg for break through pain . I am trying 1 tablet am & 1 tablet pm . I understand that this is a low dosage but it is helping . My pain is mainly in my legs , lower joints and lower back . I had 1 treatment of radiation to the sacrum for pain. I was taking up to 4000 mg of extra strength Tylenol daily but it wasn’t working and have discontinued using it unless I have a headache . I can’t imagine it was helping my liver . My oncologist / doctors have not really confirmed the cause of my pain discomfort . I am assuming that they believe it is from bone Mets when radiation was offered in the sacrum .

I have found communications difficult through the pandemic and in person appointments very few. I am hoping after my next CT scan that I can ask more questions about the pain and causes.

Good luck and keep addressing it with your drs , they don’t know unless we tell them , sometimes over & over again . You need to advocate yourself for your discomfort and to have a good / better quality of life.

I hope they find some relief for you .

Luann

[FloridaNYgirl]

I attribute all my bone pain to letrozole. I also find acupuncture really helps alleviate the pain.

[atoth17]

Yes, I have had constant back pain since my diagnosis Nov 2020. I just completed eight sessions of radiation and all pain is gone! Radiation is not fun and I put it off as a last resort but nothing was touching my pain, I’m so glad I did it. It might be worth exploring with your doctor.

[OCWarrior]

I have had numbness on the left - especially in my hand and fingers with pain in my upper back. Even though the scans don’t “show” anything being pinched that is what I’ve been prescribed physio for. I will start next week. Doc said usually numbness in the hand is due to something being pinched. Gabapentin has helped tremendously. Hope this helps. You are in my thoughts and prayers.

[Nature613]

Hi cazlav,Sorry to hear about your horrendous back pain. I’ve been having back pain in the thoracic area that gets flared up very easily. In short, areas of my spine that are damaged by disease (now under some control) have left my bones porous and weak. I achieve relief through a combination of physical activities and medication. Walking , gentle strengthening and stretching, ice and having an extra firm mattress are things that help me. I also take 15mg. of morphine sulfate 2x’s/day , low dose medical marijuana with cbd. (Edible plus topical).

I’m sending you best wishes for next weeks scan. I hope your back feels better soon. Its scary changing treatments. I hope all the steps you’re taking help improve your quality of life . That’s one thing we all hope for.

Take care.

[Bettybuckets]

Hi Gal- I had such tremendous back pain sudden onset during Covid. I tried tramadol but made me so sick. I was worried that this pain would be a long Covid effect and so I took the monoclonal antibody treatment offered for Covid and luckily it went away. So you think it could be a long Covid effect?

[Hidden in reply to Bettybuckets]

Hi, yes I had the anti viral infusion when I had covid, no back ache during my infection, back ache started 4/5 days after testing negative again which was day 9 of isolation period.I have considered it could be caused by covid due to how close after having it that this started and the fact that CT of bones haven't changed.

[queeneee]

Hi Cazlav, sorry to hear that you are in pain.. Daily exercise helped my pain , I do a 30 minute walk/jog every morning.. started with cycling as lower impact and now vary it. ( I could hardly lift my legs on diagnosis.) Also it is worth trying Lidocane patches, I had them for something else - it really depends what is causing your pain.. however they do work for me . They come in a large square which I cut into 4. Good luck