Hi All
I have one more session to go of my 15 rads, and wanted to report - with the usual caveats of “we’re all different” - that I feel really great! I had an MX, and I wonder if having radiotherapy to an area without a boob is actually easier than if you have had a recon or lumpectomy which can get sweaty and sore underneath.
I have a neat red square where my breast used to be, but which isn’t sore at all. It gets a little itchy, but then again, so does the rest of me so that may just be down to the current heatwave! I’ve been using aqueous cream twice a day since a week before I started rads.
I was expecting to feel tired, so I started taking L-carnitine supplements as someone told me they may be good for boosting energy (and possibly also weight loss…), so I don’t know if it is them or I would have felt good anyway, but right now I am bouncing with energy. I’ve been awake bright and early every morning, and I even went for a beginners run yesterday…
Maybe it’ll hit me more in a week or so? I don’t know, but right now I am so bloody grateful to feel healthy and energised.
Anyway, I am not trying to gloat, but to give comfort to those who perhaps are about to start a course of 15 rads, that it doesn’t appear to be too bad at all.
Great to hear it Flora - I’ve been thinking about you. I’m finishing my rads tomorrow (yippee!!!) and my breast is very sore - the skin isn’t broken or anything so I am lucky - it is just like sunburn really - my boob radiates heat ! the nurses said it will get worse during this week coming and next weekend and then calm down and get better so I will be fine.
I have Herceptin number 2 tomorrow and so it will be a long day but that is a big tick in the radiotherapy box so horray !
LR xx
PS does anyone know if it is safe to take L-carnitine when on herceptin ?I would like to try it given Flora’s experiences - I can ask at the hospital I guess but I always find medics sceptical about supplements !
Hi Recs
I am on herceptin too - I have no side effects from it at all, and have had 4 or 5 doses now.
I have done some brief reading about l-carnitine supplements and they seem to be inconclusive about benefit, but seem to state that they are harmless, so I figured that giving it a go was worth a try!
I do seem to have lost a teeny amount of weight too, and haven’t really been trying all that hard…!
Sorry to hear you are sore, but hopefully that will pass soon. I am keeping on with the cream until the redness fades.
Gosh, 7 weeks Finty - thats a lot. I know that my 3 weeks is very minor by comparison. Is yours for secondaries?
I asked about why some people have 25 and some only 15, and they said that a few years ago they were involved in a trial which showed that there was no benefit in the extra 10, so they now stop at 15. And I asked about boosters too - apparently they are when margins were not as clear as they would have liked, so they zap you with neutrons as well as the usual photons (I think it was that way around, anyway!!). I do find it all very interesting… I even have a copy of my planning scan, as I asked for one!
Interesting - yes I was originally told 25 then 19 and 4 of them are boosts albeit that my margins were clear - think they are just being extra sure !
I’ll give it a try cause I am eager to get back to work at end of June so my energy needs a boost - I’m fine during the day pottering about but when I do things - visit, shopping, housework etc it takes it’s toll energy wise so I’ll get some and give it a go.
Yes some of it will be for a bone met in my spine, but it is still 7 weeks on the breast and lymph nodes - 25 plus 8 boosters. To be honest I haven’t delved very deeply into the different options - my radiologist has a knack of upsetting me by being rather less optimistic about my prognosis than I am used to from my onc, so I keep the meetings short. But she knows I want to throw everything at it that I can.
Glad you are doing so well - hope to feel that good soon.
Thanks for posting about the L-carnitine. I am 5 weeks post chemo and 2.5 weeks post mx and dreading my 3 week course of radio because I am so fed up with low energy levels and general fatigue!
I’ve just had a wonderful weekend with my boyfriend and felt more or less normal (except of course for no hair, one boob, brown nails, numb fingers and toes, hot flushes and runny eyes lol!), so can’t bear the thought of being tired again!
I don’t blame you for avoiding the radiologist, Finty, if they aren’t able to try and be positive. How unhelpful. I do hope that your course doesn’t make you too tired or sore.
Had my last one this morning, so am really glad it is all over. I have been leaving work early every day, so it will be strange to have to work a full day again!! lol
Hi Gretchen, I hope the l-carnitine works for you. I was lucky in that I wasn’t too unwell during chemo either, and had MX before chemo so am long past the recovery stages of that too. I had 3 weeks off work for my MX, but it took 8 weeks before I had full movement back, and I doubt that arm will ever be as strong as it used to be. My elbow hurts if I over-exert it now.
And I totally identify with your new version of normal! I have all of those symptoms too! But I think we can cope with so much of that if we have some energy.
Hi debs. My first lot was from Holland & Barrett while on half price offer, but normal price is £19+ so I’ve just bought some from a web site for bodybuilding…!!! Am a little bit apprehensive about the quality, but am going to give them a go!
I don’t usually ‘do’ supplements, so am not well informed about good suppliers.
Thanks Flora - I have a H&B locally, so will give them a go initially. I did see a nutritionist for a while and have a couple of supplement suppliers recommended by her, so may check their availability and pricing, but its really good to know I can get them easily and conveniently.