So Tired Of It All

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Having undergone right mastectomy and axillary clearance (1 node affected), 4FEC, 4TAX, 15 radiotherapy treatments, Arimidex and now about to start Herceptin, it seems my bone density is very low and I have been recalled after my DEXA scan for more x-rays, this time of my spine, and more blood tests.

I am finding this all very hard to cope with right now, it seems I have gone from being fit as a fiddle to having all sorts of things wrong with me! I am fed up with the side effects of all the stuff I have had pumped into me, all I started off with was one swollen lymph node and two TINY tumours that only an MRI could find.

Like everyone else, I am now permanently numb in my armpit and underarm, and a patch on my back from the clearance, and to add to this I have peripheral neuropathy from the Taxotere, mostly in my feet. The Arimidex is making me feel weak, tired, and good for nothing and God alone knows what the Herceptin has in store for me when I start it this Thursday, and NOW I have the bone thingy to contend with!

I don’t want more bloods taken, or worse, more x-rays! What the heck is all this radiation going to do to my body? This year I’ve already had:

2 mammos
2 Ultrasound scans
1 MRI scan
1 CT scan
1 Chest x-ray
1 bone scan
15 Rads
1 DEXA scan
1 Echocardiogram

And to top it all I can’t find any mastectomy swimwear or bras in a 32DD!

To be honest…I don’t think I can stand anymore and am thinking of taking my chances now, and just getting on with my life. Blow it all!

Sorry for the rant, but it has made me feel a little better :wink:

xxx

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Oh Justme, I know exactly how you feel! No-one tells you about all the crap when you start out on this journey, do they? Things like numb armpits & numb feet you only find out about as you go along. And you forgot to mention the hot flushes.

We start off feeling fine, and end up a physical wreck. I am trying so hard to keep my fitness up, but I am so tired all the time. Every time I feel that I am getting somewhere, something else comes along to scupper it.

Just wanted to let you know that you are not alone in feeling like you do.

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yep! i’m another one feeling exactly the same right now… got to keep on keeping on i guess and i try to remind myself to be grateful for all the options available. but. it is not easy. i haven’t had any energy for ages now, i have no taste, i am sick of having hot sweats and just showering is a big deal and then i’m back on the bed again. i’m also about to start on next leg - rads and then herceptin but really just desperately want to go out and play again. wishing you loads of luck, carrie x

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I am so sorry to hear you are feeling like this and are having problems with your bone density. I remember you were diagnosed about the same time as me but, because I had awful problems with chemo, I could only have 4 so am now further along with the treatment.

I understand how you feel because before all this treatment I felt fine. I didn’t know there was anything wrong as the cancer was found during the routine screening programme and the lump was very deep so there was nothing obvious.

I am about to have my 6th Herceptin tomorrow and this is ok, as long as it doesn’t affect your heart. It really is not like chemo. You will have echocardiograms every 3 months to monitor your heart. I will also hear about my bone density scan result tomorrow.

I am back at work now on a phased return and although I get tired, it does take my mind off the cancer.

You will get there, but it does seem endless at the time. The thought of not taking up all the treatment is quite frightening to me. I was really worried when I had to give up chemo, but the risks of the side effects I had were considered to be too high to continue.

All the very best
Anne

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Thanks, girls, for your replies.

RoadRunner?..you must be the lady who ran all through your chemo treatments, what a star! I could never have done that, and I’m sorry that you are finding things just as difficult as I am. I wasn’t as fit as that before the chemo, let alone when I was having it. It must be even more frustrating for you that your fitness levels have dropped with all the treatment.

Carriemitch, like you, just showering is enough to wear me out, and I’m having real difficulty trying to cope with household chores, every little thing seems like climbing a mountain. I think I am a few weeks ahead of you with treatment, as I started rads 27 Dec and finished 17 Jan. I found it a real struggle for a few weeks after chemo finished, and then the travelling to London for the rads was very tiring, but I did pick up afterwards and didn’t feel too bad. However I am now into my 6th week of Arimidex, and I think it is causing this current feeling of exhaustion and weakness.

Anne, I had an idea that my bone density wasn’t going to be great, as I am slightly built and only weigh 7st 5lbs…and didn’t put any on at all going through chemo!

My diagnosis was a shock too, as I had had a clear mammo only a few months before I noticed a small bump in my underarm which I thought was a sebaceous cyst. Nothing ever showed up in the breast on mammos or ultrasounds at the breast clinic - but the underarm biopsy showed it was a lymph node containing ductal BC cells. An MRI eventually picked up two tiny lesions in the breast, one 3.5mm and one 6mm, and I was devasted that for these tiny things I needed mastectomy and chemo, despite the only lymph node affected being the one I had initially found.

One of the breast tumours was ER and PR positive and the other was HER2 positive, so everything is being chucked at me.

I must admit to being very scared about starting the Herceptin, in view of the possibility of heart failure (my ECHO score was 70), and I am dreading being in the hospital chemo suite for 6 hours on Thurs in case of “allergic reaction”, whatever that means?

It’s just that with this bone density thing, I seem to have reached the end of my tether! I am told I have to have spinal x-rays and more blood tests, and honestly, I think I must glow green in the dark after all the radiation I’ve already had…and I’m dreading the needles for Herceptin. Surely as I’ve already had countless blood tests on this journey they can refer back to them.

Anyway, I’m starting to rant again, so will shut up, and wish all of you the very best of everything! We sure deserve it after this lot!

xxx

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You deserve a good result after all you’ve already been through. I am only at the beginning of my own journey against this thing,( like you, mine didn’t show up on the mammogram),so can only guess what you feel like,but my thoughts and prayers will be with you. Life is so precious that it’s worth fighting for and I’ll pray that you receive that inner strength you need for this next,and hopefully, last stage of treatment. I’ll pray that you won’t get any side effects from the herceptin, but that quite the reverse happens - you start to feel better!
I’ve had loads of people praying for me, we need all the help we can get to fight this thing!
I’ll pray for you tonight. We are all in this together, don’t feel alone.Keep talking, it helps.What about calling the Helpline to talk, they have an understanding ear.Don’t give up when you’ve come this far.
God bless, Ann

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Justme, don’t worry about the herceptin. I’m off to have no 6 in a couple of hours. It’s just a pain having to keep on going to the hospital every three weeks. I get the herceptin dripping nose, which varies from nothing to occasional full-on heavy cold type streaming, and I am tired which the onc says is the herceptin. Otherwise it’s OK.

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Ive just had number 12 of 17 Herceptin’s they are nothing like chemo I had 3 Fec & 3 Tax, I could barely walk after having my Tax, & a few more odd symptoms, Herceptin is nothing like that, I did have a slight reaction on my first Her, with what felt like having the chills & shakes they do monitor you very closely on the first time, they just take you off give you a break then put you back on slower, I then dreaded No 2 but had no reaction so now it only takes 1/2 hour to run through so very quick, still get tired but I think thats quite normal after all we go through with these treatments.
Keep positive

Love
Helen x

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Dear Justme

It seems I am like you and have problems with my bone density scan results. I honestly didn’t expect this as I have never had any broken bones or anything so I was really shocked to hear this, this morning. My spine and one hip are the problem areas, I think. I didn’t really take it all in.

I will have to see my GP and take calcium, vitamin D and bisphosphonates.

On the bright side, I would not have known about this without the scan so hopefully I can have all this treatment and prevent it getting worse. But I feel as if I already take so much medication and can’t imagine how many pills I will be taking in the future!

My echocardiogram was fine though so Herceptin number 6 will happen this afternoon.

All the best
Anne

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Thanks for the reassurances Helen, AnnaG and Roadrunner…hopefully I won’t keel over tomorrow after all! And I will keep on with the treatments as prescribed so long as they don’t kill me first!

I don’t fancy the drippy nose syndrome though…I had that on chemo! Very embarrasing…me walking my dog on lead, and bending over to “pick up” after him, with long stream of mucous (sounds so much better than snot) dangling from my nose and no hands free to wipe it! Happened countless times and does nothing for one’s image does it? Well you have to laugh or you’d cry!

Oh Anne, I hope I didn’t put the mockers on your scan! Sorry you’ve had a shock. I was rather expecting a poor result anyway, even though I’ve had no fractures or problems. I’ve been to the hospital today actually, and had the spinal x-rays and bloods done as ordered by the osteoporosis nurse. Now I have to wait for an appointment at the clinic to see the doctor for results.

I already take calcium with Vit D, alongside the Arimidex, but my onc did say that because of the initial bone density results, I will also need bisphosphonates.

So, as well as having one boob, very little hair, numbness, hot flushes, dodgy bones, addled brains and a green glow, I’m also rattling when I walk, what with all the pills!

Guess my pulling days are over then! ;-))

xxx

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Hi justme,
your post made me smile. You sound just like my sister who is also p-----d off with this disease. she has had the same treatment as you and also has just had her first bone density scan which has shown weakness in her spine. So far they haven’t asked for an xray or bloods ! but i suppose it will come next. She has been started on fosamax but has now started with back pain ? Don’t know whether these biophosphanates can cause bone pain ? ANYONE KNOW??. Do you mind asking how old you are? she is 37. Good luck with the results , let us know how you get on
claire

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Hi Claire,

Sorry to hear your sis is going through this too…and at such a tender age! I am 58, and 11 years post menopause, so I expected to hear that my bone density was not great!

I wondered why I was called for spinal x-rays (already had the DEXA scan which did hips), and I asked today when I went to the x-ray department. It seems that when I filled in the questionnaire prior to the DEXA I ticked yes to the question “do you suffer with back pain”, and so they suspected that I might have osteoporosis in the spine. Actually, I ticked yes because I have suffered back pain for years after rupturing a disc and having surgery on it! Don’t know why I had to have bloods done…as if I haven’t been pricked often enough on this journey lol!

Sorry I don’t know the answer to bone pain as I haven’t yet started on the bisphosphanates…another pill, another side effect!

Best wishes to your sister, give her a hug from me!

xxx

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thanks justme,
you will be having your bloods done to check the calcium levels in your blood i think, as when you have bone loss you can get too much calcium in the blood which can make you ill. Bisphosphanates help prevent this. good luck with the results. My sister had her ovaries out at 36 as she is 8/8 oestrogen positive. much too young to have gone through the menopause and all the s–t that goes with it. She has been FAB !! No moaning etc, I love her dearly x
all the best claire