increasing pain during Chemo (help!)

Hi,

I have been reading various subjects on the forum and am becoming very worried as i am having pain in my gland areas. It started after 3 FEC in my left side underarm ( I have had 6 nodes removed to which 1 had mets in) My breast care nurse said this was normal) Now three weeks later I have pain siensations in my neck and to the other arm pit and side of my neck. My first taxotere was Brutal, aches and pain galore and I ended up in hosiptal with a suspected infection been on AB cover since.
I have asked to see on ONC tomorrow ( one week earlier than my Chemo as I really am scared it has spread to my Lympth nodes). I am classes as being node clear as the mets were only found by this extra test and they are clear according to current guideline. I had a 2.2cm grade 3 cancer
Please has anyone experienced this pain / sensations
I thank everyone for posting their experiences, they have helped so much when things seem desperate. I have laughed and cried with you all.

Julie,

I was diagnosed Dec '07 with a grade 3, triple negative 3.5cm tumour. My treatment plan was neo-adjuvant (chemo first) 4x AC/4x Taxotere. After 4x AC my tumour shrunk from 3.5cm to 2cm, but unfortunately stopped responding whilst on Taxotere and even started growing again. I had a lot of pain and swollen glands in arm pits whilst on Tax. So much so that I had convinced myself that because of the lack of response on Taxotere that the tumour was spreading to my nodes. You can imagine my surprise when I went for the results of my path report (post surgery) that ALL my lymph nodes came back as clear. I really wouldn’t worry too much at this stage, Taxotere is the gold standard of chemo treatments and is exceptionally harsh which is why I think it makes you feel extremely run down, your glands swell and you can have lots of aches and pains from other areas of the body. Even now I still feel very run down (3 months post chemo/2 months post surgery) and know that it is going to still take many more months before I can get back to feeling anywhere near I did before dx. I hope this helps. Best wishes, Jacqui x

just to say, Im on tax and have lots of aches and pains around my neck and throat - hopefully its just the chemo doing its job
xx

Hi Julie

If you feel you would like to talk this through with someone from our help line please don’t hesitate to give them a call. Here you are able to share your worries and concerns in confidence with one of our trained member of staff, who can offer you a ‘listening ear’ as well as support and advice. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.

I hope this is of help.

Kind regards
Sam
BCC Facilitator

Hi,

Thanks for your message Doylej it really took my fears to a lower level. Saw my ONC today and she feels the pain is related to the TAX. She also feels I have had an allergic reaction to it as the path report from my stay in hospital showed no infection. Low BP and fast heart rate leads her to think this way. She says my consultant may decide to change me from TAx. At this point I quickly started defending the drug as i know it’s one of the best on the market. So she is going to recommended that i stay on a lower does of steroids for a week to minimise it happening again. But I wont know if the Consultant is happy with this until next week. It’s funny how i was crying never again last week but now want he drug so bad. I think I need to feel I have given it my all!!!

Thanks again, I dont know what I would do without you all xxxxx

Hi Julie,

Glad your ONC managed to allay your fears. I am suffering terrible pain with TAX, on morphine syrup and tramadol for a week after each dose. I’m also on steroids for a week after each dose. My neck, shoulders, upper back etc feel swollen and tender all the time.

I’m putting up with it coz it’s meant to be brilliant, but I can’t wait for a week after 28/8, when all this pain will be finished with. Then I get 25 rads!!!

Ask your GP for decent pain relief - it REALLY DOES make all the difference, and they know TAX can be hard to tolerate.

All the best
Sue xx

I too have been suffering lots of strange aches and pains on Tax, weak legs, knees hurt, ribcage area hurts and generally feel so weak sometimes I just can’t stand. It’s worth it though to get rid of these THING and we all seem to suffer in one way or another. For pain relief I am only given ibuprofen and paracetamol - I do wish I could find something a bit stronger. Generally though the pains & aches get better after a few days.

I’ll be having my half way checks next week so fingers crossed it has all been worth the trauma.

Good luck xx

Thanks Peacock and WestsideSue,

Sorry you both are also in pain but it comforts me to know it’s normal. Although I still am a little paranoid as the pain is still in my neck and Lymph gland area. Hey WestsideSue, I also am scheduled my last does on the 28th August. Cant wait to celebrate.
Peacock what do you mean by your halfway checks? ( no body has examined me since 22nd April when I had the lump removed)

hi julie
I live in France so I think things might be a little different here to UK.
I am having 4 x taxotere, so far I’ve had 3 so I’m having a mammo and ultrasound before the next chemo to see whether it is working and if there is shrinkage. They are also doing a huge blood check - the vampires will definitely be out that day! I will then see my Onc before the 4th chemo, it is my understanding that if all is working well then they will continue with another 4 chemo (not tax) then that will be followed by mast + rads + herceptin.

Aches are quite bad today, rib pain is back so that is a bit worrying - but then aren’t they all?

Good luck

peacock - please please please ask for decent pain relief. You don’t have to suffer, there is better medication out there.
All the best to you,

Sue xx

Julie,

I really can’t reiterate enough how much pain I had under my arm and in my glands and neck due to Tax (the whole area was so painful and swollen). So much so that I thought brand new tumours were establishing themselves in that area. I’m sure your Onc is right and that the pain you are suffering from in your glands is due to Tax - if there was anything untoward in that area, I’m sure he would have felt it when he examined you.

It is really horrible when you have lots of aches and pains whilst having chemo and the worry that it might be something sinister, but it is very normal when undergoing Tax. Best wishes, Jacqui

Do you have Neulasta or GCSF injections?I found these gave the most horrific pain in jaw,neck and glands.Overall the pains i had on tax were the worst ever esp in back and legs.I was given co-codamol and voltarol[diflenac?]to take together and they did work.None of the others was as bad for pain as the first but other side effects were cumulative.All the best,Valxx

Hi DoyleJ,

I have been wondering about being checked over as no one has looked or physically examined since my operation on the 22nd of April. Do you think I should insist they check me out???

Hi Horace,

Thanks for sharing your experiences with me. No I don’t have Neulasta injections but they are thinking i will this time. Something else to look forward to eh???

Warmest regards
Julie xx