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Radiation for stage 4 very painful

intheclub
intheclub Member Posts: 20

On the eve of being 10 years cancer free after Stage 2 lobular I am now joining you in the fight of my life.

I am on Ibrance and letrozole and started radiation on my back and hip this week. There are innumerous tumors in my spine with the biggest around L2-L4. When I got home yesterday after radiation I thought I would die the pain was so extreme. A deep ache like cramp on back muscle flanks - I called my GP crying - my 18 year old daughter and husband were both with me - I’d taken pain meds ten mins before so she said they wouldn’t be working yet but she suggested hot shower on back which helped immediately.

It was explained that this is called pain flare.

I wonder if there’s anyone who has had this who could provide info or just good old moral support. This has been such a shocking diagnosis and I’m now trying to work fast to gather info on things I can do to extend my life.

I am really hoping to find anyone similar stage 4 lobular who I can share my diagnosis with. I am also doing what is quite normal in that I want to know what anyone else has done with any kind of food, nutrition or anything at all that is helping them stay well and survive. I have an excellent oncologist and GP and I am perfectly happy with conventional treatment but u won’t be surprised to hear me say I will do anything that I can to help my situation. I’m hearing about hyperbaric chambers, infrared lights, and my heart and mind is open! But where to start! I am having a consult with one of New Zealand’s leading nutritionists which will be really great.

But if anyone has anything they’d recommend I look into that would be so so great. I always knew I would beat breast cancer ten years ago and now I’m doing it again!

I remember how amazing this website was ten years ago and now I’m back with you now again. I hope I can also provide helpful information as time goes by, for instance I’m very happy to share information from my appointment with the nutritionist (she has strong interest in cancer).

As far as my diagnosis goes the tumors are in my spine, leg and hip, tummy, chest (not lungs) near kidney if it’s of use I can post scan results.

I am sending each and every one of you here the biggest hugs all the way from New Zealand. Without doubt we are stronger together.

Thank you. xo

Comments

  • jhl
    jhl Member Posts: 174
    edited March 2022

    This is a Stage 4 thread so I'm only going to jump in to suggest you ask your RO about using steroids (dexamethasone). In the last 10 years, dexamethasone has been shown to significantly reduce pain flares from radiation.

    Best of luck,

    Jane

  • sondraf
    sondraf Member Posts: 1,579
    edited March 2022

    Have they biopsied your tumors to check if they remain the original hormone positive profile?

    Ibrance and letrozole are a strong combination and work well for a lot of women. We have more than a few on here in the 5 years+ club. I got about the median out of it - 2 years - but the old adage definitely applies regarding everyone's cancer is different and your mileage may vary. I was hoping for at least 3 years but about a year in knew it just wasn't quite the drug for me and my situation. That is ok, there are plenty others to try.

    For radiation pain - I had sizeable tumors at L4 and S1 which have been radiated, and L3 and L5 were taken care of as well in those sessions. The radiation continues to work on them over months, but I do remember being rather afraid of the number of over the counter pain meds I was taking to manage the post S1 radiation. That was a terrible lesion but sure enough, over following weeks I slowly was able to decrease my pain killers as required. You pretty much have to suffer here for a few weeks until a GP/anyone will take you seriously, so while they gave me dex in the hospital thinking I had cord compression, as soon as they saw it wasn't that it was back to OTC.

    My L4 was just done and I never felt a thing to indicate it had grown, but now I have some stiff/soreness in that area throughout the day and a little bit of pain that radiates to either side if I have over done it. Managing pain is part of the MBC Life as it were - if its not being managed with your current approach, you may need to highlight it to your MO and/or find out if your hospital has a specialist pain management team, to find something that will take that edge off for a few weeks. The thing about pain is that you have to get ahead of it - when its at a critical point its too late. Did your GP or someone explain that you can alternate 1000mg paracetemol with 400mg ibuprofen through the day? That way you always have something in your system but they are ok doses to take.

    Be careful with too hot of water for too much time around the area of radiation, although I hear you on the hot shower!

    I am not lobular, but I think there is a specific Stage IV lobular page.

    I don't worry about diet or any other potential alternative therapies, mostly because its not as accepted here in the UK and frankly I dont have the time or inclination to deal with cancer beyond the basic standard treatment requirements. I do maintain my water intake, don't drink alcohol, and eat whole foods home cooked, though. Santabarbarian, while she wasnt stage IV, has some good insight into alternative approaches and there is a special thread on that too.

  • LI77
    LI77 Member Posts: 68
    edited March 2022

    Hi Intheclub,

    I also have Mets to most of my spine and pelvis. I started radiation about a month ago. My largest Mets are in L2 and S2 (basically the entire vertebral levels are covered). I was having increasing pain with each radiation session to where it became unbearable after the fifth treatment. I was taking dexamethasone, gabapentin, and norco with no relief.

    I had an MRI after it got so bad that I was basically unable to move. Apparently, as the radiation was working, there was so much cancer in L2, it completely collapsed and fractured. I’ve had ER visits and a hospital admission and am now seeing a pain management doctor. I’ve had an epidural steroid injection, am on numerous medications, and may need additional procedures on L2.

    The last two weeks have been the worst experience of my life and I am just now starting to feel normal. I still cannot lie flat or do any sort of activity.

    Will your doctor do an MRI to see if this could be happening to you? You definitely want to catch it before it fractures.