Am wondering if anyone has had radiotherapy to the same area for the second time.
I have extensive bone mets and for the past 2 years pain has become an issue in my lower spine. I suppose I have been lucky even though I have had bone mets for 8 years that I haven’t had much trouble with pain before. I have had a number of bone & mri scans but they showed no change so have had to use a lot of pain meds such as oxycontin, fentanyl lozenges, sativex (cannabis!) etc. which make things tolerable. My onc just recently has been suggesting I consider going back on chemo and I am really reluctant as I have had so many over the years. He feels the pain may be due to a tumour growing slowly in the spine but without any evidence of this on scans I have been unwilling to go the chemo route. 2 years ago I had radiotherapy to the lower spine L1-4, and my right hip but it didnt work! With a year’s gap since the last bone & mri I asked for new ones and at long last I have an answer to the pain problem. It was not in my bones but a soft tissue tumour lying outside the bone, alongside the lower spine and wrapping round the nerves exiting L2. Bit scary really to know the herceptin hadn’t controlled that. I saw the rads team yesterday and they have said it would be ok to zap the area again, even though it will overlap the previous area treated. I actually came away feeling really pleased that they have said yes - I didn’t think they would. It also means I can put off the evil day that I have to go back to chemo. I wondered if any of you have had radiotherapy to the same area a 2nd time round? and if you had any additional problems. I dont remember reading about anyone having a soft tumour like this outside the bones so any feed back would be appreciated.
Dawn
xx
Hello Dawn
sorry I don’t have any answers - not in the position you are, but often follow your posts and wanted to send love and support.
I hope you can get treatment that resolves the pain issue.
thinking of you xxx
monica
Hi Dawn
Sorry I don’t have any answers about the rads but just wishing you the best with this treatment - it’s good that your onc has seen this as a way of treating this tumour and not having to go back on chemo must be a big plus. At least they (and you) know what the problem has been and are sorting it out.
Nicky x
Hello Dawn, the pain sounds so debilitating…I hope the rads really help and the pain is well and truly zapped. I wondered if Lapatinib is another option for you to try, being her2+?
Take Care…xxx
Hi Dawn
No experience of rads,so cant help you, but just wanted to send you big hug and lots of love and hope you get sorted out soon.
Lots of love
Dawn
xxx
Hi Dawn
I have had rads twice in lower spine area with about a year’s gap in between. No particular complications, except incredibly painful second time around almost immediately afterwards and I was sick, had to go to bed which isn’t something I normally do. But that pain subsided after a couple of days and it has reduced the pain to a bearable level, so I think it was worth doing.
Don’t have experience of the kind of soft tissue tumour you are describing, but like the others want to wish you well with the treatment.
Love Alison x
Hi Dawn
I too have had rads twice to lumbar spine and sacrum with about a year’s gap in between. I seem to remember being told that I was given a lower dose second time around. Don’t remember having any particular problems at the time but now (2-3 years later) I have a definate dent in my back there and the skin is puckered and tends to be dry. I thought it might have something to do with vertebrae collapsing in that area but orthopaedic surgeon who did vertebraplasty said it was due to radiation damage.
The rads did helped for a quite a while, but recently I’ve had an increasing amount of pain which is becoming debilitating. Had an MRI scan to see if the disease is progressing.
I don’t know anything about soft tissue tumour, so can’t offer any thoughts about that one. Understand how you must me feeling about the possibility of herceptin not keeping things in check.
Hope the rads help with the pain.
Thinking of you and sending you best wishes.
Take care.
Love Judith
xxxx
Thank you all for your good wishes.
Alison & Judith thank you for sharing your experiences. I remember the first time they did that area and my hip at the same time I reacted quite badly with sickness, nausea and increased pain. It was bearable but disappointing that it didn’t seem to work to ease the pain. I really hope this time round it doesn’t make things worse. Am prepared with anti-sickness pills at the ready. I am already on a lot of medication including oxycontin, fentanyl lozenges, pregabalin etc.!!! It would be bliss to be able to do away with some of them.
Dawn
xx
Hi Dawn,
I did read a ladies blog last year, I am sorry can’t link to it as I just stumbled across it when searching for something else. The lady had soft tissue tumours in her spine from bone mets, I think rads and surgery were used. She had several over a period of time. She did become pain free after treatment and took up swimming again, which was a passion of hers.
I know thats not very detailed but I recalled it when I read your post.
I’m sorry to hear that you have so much pain and hopefully the rads will knock it for six. I had Rads to L1 last June, it didn’t seem to work until about two months after the treatment. I didn’t have increased pain after the rads, just felt tired, took steriods and anti sickness for a few days.
Best wishes.
Paula x
Hi Dawn,
You have helped so many of us with you’re wisdom,just wish i could help you…
Good luck with you’re treatment.
Love Lesleyxx
Hi Dawn
I was really upset to read that you are having problems with a soft tissue tumour - you and I have been doing so well on Herceptin!! You say you are going to have radio but what are they going to do about the Herceptin regime? I have noted that some people keep on with the Herceptin but combine with other treatments as that seems to work by slowing down growth.
You sound so up-beat in your post, you really are an amazing woman - I am such a wimp if I have pain or feel sick (that I cannot stand) and you are coping with so much pain and yet just get on with life.
I will be thinking of you lots as you get over this setback. I will be seeing you in your wonderful garden, letting all the energy of Spring do its part to heal and bring you joy.
Love
Blondie