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Nefertari's avatar
Nefertari
Member
7 years ago

Chemo deferred due to Neuropathy, mixed emotions

Hi Everyone,

I finished my AC chemo.  I had 4 rounds three weeks apart with a few side effects, however I was able to drive myself there and back and felt that I could get through it.  I mostly had fatigue, sleeplessness at night, hot feet and hands.  The worst for me was the nausea which started immediately, I lost 7 kilo as I didn't enjoy food, both the smell & taste and I had no appetite despite taking steroids.  

After a three week break I started on Paclitaxol (spelling?) and I was supposed to have 12 weekly cycles. Again I drove myself there and back to the first five without too much trouble, a bit of neuropathy in my fingers but that usually disappeared in three days.

My 6th cycle was bought forward by one day due to Good Friday and immediately afterwards, I had numbness in both hands and feet, a scary drive home :wink:
 
The next day it spread to the soles and palms on both sides and also the back of my right leg and right knee.  I also started having stabbing pains in my right underarm and a burning pain in my right hip.
After a consultation with my Oncologist he decided to suspend my weekly chemos for two weeks till I see the surgeon on May 7th.  They will then decide if I have the surgery sooner or try a different chemo, I guess depending on the neuropathy?

Initially I was disappointed in myself (that I couldn't get through them all), I was quite frustrated and then secretly happy to have a couple of weeks off from the hospital.  Now I find myself very weepy as these side effects are not going away and I am worrying if they ever will?

I have no idea what effect the chemo has had on my tumour but both the oncologist and my GP say they can not feel it and I can no longer see it above my skin like before.

What is the next stage?  Do I have another scan before surgery to check on the size of the tumour?
I am not sure how I should feel, so much is happening in my life with four other family members dealing with cancers and I feel in a limbo state. At least while I was having the chemo, I could check another one off the list.

Did anyone else experience this frustration?  Sorry to go on but I try to keep it inside as my family already has a lot to deal with and I don't want them worrying about me too.

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  • Nefertari's avatar
    Nefertari
    Member
    7 years ago
    Thanks for the reply Beryl, yes my head is well and truly spinning.

    When I was first diagnosed at the beginning of December, I met the breast nurse once and was given her card. 
    Soon after I asked to see her and was told she was on holidays for Christmas (3 weeks), I never really needed her since then until now.
    After all this mucking around I rang her today as I had seen her in the waiting room clinic from time to time.  It was a recorded message - not available till June some time, if my situation is an emergency come to hospital, see your GP etc...not very reassuring. 
    The best advice I get comes from the Oncology nurse who I have seen regularly instead of the Oncologist but she is away with flu, hence the shuffling me on to Registrar at the last minute. 
    I have voiced my annoyance with the hospital and so I just got a call from the chemo Day unit, trying to explain. 
    They told me no new chemo drug is ordered it is still paclitaxol as far as the computer shows.   They said after I see the Oncologist on the 7th, my chemo appt may be cancelled if I still have neuropathy. I tried saying Im seeing the Registrar not the Oncologist!!!!, I gave up.  

    Decided I am getting too frustrated and weepy to do this via phone, so I will go to the appointments on Tuesday and voice  my dissatisfaction in person.  Maybe then I will stop slipping through the cracks?

    In the mean time I will try to relax and enjoy the next three days before I have to bang my head against the wall on Tuesday haha  I will let you know how I get on.
  • Beryl_C_'s avatar
    Beryl_C_
    Member
    7 years ago
    Nefertari your head must be spinning! I'm a public patient and have never experienced what you describe except for the very occasional delay of an hour - as if you don't have enough to deal with! Are you having regular conversations with your Breast Care Nurse - they may have little influence over the problem but can reassure you, they are an informed, aware and sensitive support. At the risk of stating the obvious I always take my knitting, a book etc for those possible delays. If its really getting you down talk with a Cancer Council counsellar, a few times when a situation was beyond my control I had a 'bit of a chat' with the hospital pastor - with all of these you take what you want and leave the rest. I have always found that just venting the frustration with someone who is not friend or family settles me. This group is also the best support possible! Stay in touch.

  • Nefertari's avatar
    Nefertari
    Member
    7 years ago
    Thanks for the information and the pep talk, I needed it ;)

    Things keep getting shifted around, cancelled or rescheduled adding to my confusion. 
    Out of all my appointments to Oncology, I have only seen the Oncologist twice, the rest of the time I have seen the nurse as he is always "double-booked". Public Hospital system.

    It has never been a problem until now when I have neuropathy, and need to ask questions.  At my last visit with nurse he popped in and decided to cancel the next two weeks (Cycle 7 & 8). I asked him then if I was to get more chemo - he said maybe something else?  He said we will wait and see and discuss after my Surgeon visit.

    Another Oncology appt was made for me on 7th May, to take place before my scheduled 10 am appt with the Breast Surgeon. 
    This Onc appointment was cancelled on Wednesday and an appt made to see the Registrar instead at 10.20 on 7th May. 
    I did remind them about my 10 am appt with the Surgeon in the same building.  I do not want to miss that one as I have been four months waiting on that one.  

    They said he will be made "aware" of where I am.  The appointments are never on time, waiting up to an hour or more is normal. So I can see a problem being just 20 mins apart.

    Today I get a call saying that a chemo appt has been made for me on the 10th May, without any consultation from them about what type of chemo (not keen on paclitaxol naturally), also no one has been in touch to find out how the neuroparhy is?  Hello it is still here with no sign of improvement?

    I was going to cancel the Registrar but decided to stick with it but just emphasise the importance of seeing the Surgeon as I will ask him about the chemo,  does that sound reasonable?  If it is Paclitaxol, Im refusing that one.
  • Sister's avatar
    Sister
    Member
    7 years ago
    Yes, do remember that they really don't know what the best dose is so you've done well getting to taxol 6.
  • Afraser's avatar
    Afraser
    Member
    7 years ago
    Deep breaths! You are doing the very best you can and you should never be disappointed in that. I had a period of serious pain in my feet on Taxol (none in my legs though) so much so that I really worried about not being able to walk. The good news is that it diminished. The bad news is that lingering effects of neuropathy can linger, in some cases, not all, for a long time. Stopping for two weeks seems very sensible, to avoid any further impact and unlikely to do any harm regarding your cancer treatment. You have completed A/C and almost half of Taxol. Your oncologist may suggest a number of options but that will depend on what results the break induces. You have a lot on your plate so it's not at all surprising that any hiccup on the way is upsetting. Bear in mind that most chemo regimes are based on the maximum you can withstand without ongoing damage (emphasis on the last part!) rather than a finely honed amount. I am grateful for treatment, but some of it is still a sledgehammer to open a walnut stuff.  We'd all manage the side effects better if we knew that chemo was a sure fire way of ensuring we never had cancer again, but sadly that's not the case. So... We just all do the best we can. Sounds like you have already had benefits and surgery will hugely assist too. Unfortunately you now need to wait a bit for the next step. Do whatever you can to relax as much as possible. Best regards.