Waiting for chemo!!

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  • Emim
    Emim Member Posts: 27
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    I haven't had too many side effects so far after my first chemo on Friday - or at least nothing unexpected. The worst was hip and leg pain for a couple of days after the neulasta injection.  I was doing pretty well otherwise, but I've realised that I need to rest more as I've crashed at 6pm twice after not having a nap during the day and my eyelid was twitching yesterday. It is a bit hard to figure out what my body needs each day. I'm used to being really busy with work and it is a new experience to have a lot of time on my hands. I've gone for a couple of walks as keeping active helps with the fatigue. Today I have a sore back, so I will have to take it easy. 
  • Harvey1903
    Harvey1903 Member Posts: 189
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    Hi @emim. @kmakm @dougal. Had first one yesterday.  Awful night last night massive headache and nausea was quite bad, felt like I had a really really big night.  Lol.  Took nausea tablets this morning took dog for a walk which really helped.  Took nurses six goes with the cannula, off to ed so they could use the ultrasound. Needless to say I'm now the difficult one, put them and me two hours behind. Positive though I now have a permanent time in oncology as I will have go through radiology to get the cannular put in and you don't mess with radiology. Julie
  • Sister
    Sister Member Posts: 4,960
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    If the meds they've given you don't work well enough @Harvey1903 ring up and let them know.
  • Harvey1903
    Harvey1903 Member Posts: 189
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    @sister. Thanks. Did so, monitor temp, take panadol, could of been too much fluid.  J
  • kmakm
    kmakm Member Posts: 7,974
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    @Harvey1903 I had a headache on and off for the whole of chemo (I don't get them very often) but it was worst in the first cycle. Maybe our bodies adjust?
  • arpie
    arpie Member Posts: 7,612
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    Liz O'Riordan (A UK Breast cancer surgeon who got breast cancer) has written a terrific Blog on her BC - and has these tips that may help you with some of the side effects of the chemo?  The rest of her blog is worth a read as well.
    http://liz.oriordan.co.uk/blog/files/cope-with-chemo.html

    All the best with your ongoing chemo treatment, ladies xxx ... @Harvey1903    @Emim   @dougal



  • Harvey1903
    Harvey1903 Member Posts: 189
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    Thanks @Arlie will have a look.  Good day today :)
  • Harvey1903
    Harvey1903 Member Posts: 189
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    @arpie.  !
  • kmakm
    kmakm Member Posts: 7,974
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    Glad you had a good one @Harvey1903.

    My BS put me onto Liz O'Riordan's blog. It was my bible before I stopped lurking here and joined. She writes very well. K xox
  • dougal
    dougal Member Posts: 19
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    So day 8 after first chemo of TCH I felt extreme tiredness and shivery, temperature rose to 39.4 by time I got to emergency! ended up 4 nights in hospital on antibiotics as my white blood cells dropped to zero!! very scary. Had so many tests but no infection found, one of the doctors said just having no white blood cells could have caused very high temperature. Have to say I'm fed up as if I'd been given the nuelasta injection day after chemo could probably have avoided this happening, but when I asked for it was told to wait and see if I need it next time as it's expensive!!! well now ended up costing a lot more as ended up with hospital stay, injections, antibiotics, blood thinning injections!!!! Also a quick question, does anyone else have problems with having canula put in. omg what a nightmare, can only use left arm because of risk of lymphodema on right side. they had to get senior doctor to try using help of ultrasound and still couldn't get it in. Ended up with it on top of my foot! the pain was unbelievable. Apparently you are more sensitive to pain whilst on chemo, didn't know that. 
  • Afraser
    Afraser Member Posts: 4,379
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    A small beef in the scheme of things but many nurses are no good with canulas and have to get doctors or anaesthetists to do it. My day oncology nurses were good to brilliant, which made it harder to understand why general nurses in the same hospital were not good at all. I too have a lymphoedemic arm, so roaming up and down puncturing my useable arm was not a fabulous idea. It wasn't so much painful as pointless and I ended up looking like a dot painting! I am glad you have had no infection (I had a few of those but all were ultimately caused by a seroma, not loss of white blood cells) but no, you don't need any of the attendant misery of high temperatures and being in hospital. Here's hoping it's a one off! 
  • Emim
    Emim Member Posts: 27
    edited September 2018
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    I'm so sorry to read about your experience @dougal. That is a very high temperature and must have been very scary for you. At my hospital it is standard to be given a neulasta injection within 24 hours of each cycle of chemo. It is disappointing that was not offered to you, with such negative consequences.

    I got really bad bone bad in my hips, thighs and back from the neulasta injection, or perhaps a side effect from the TC chemo, which lasted for about 4 days. I took panadol, which didn't help. I am seeing my oncologist tomorrow, so will ask if there is anything else I can take. I have seen in other threads that claratyne might help with the bone pain.  

    Otherwise, I haven't had such a bad run. I am very sensitive to the sun and broke out in a rash on my face and chest after being in the sun for a few minutes on Sunday, it almost looked like measles. I felt a bit like a vampire. I have avoided the sun since - which hasn't been hard as it has been mostly grey and raining.  I also ate a strawberry, which was a big mistake as I had an immediate allergic reaction with getting lots of little bumps in my mouth. I also suddenly have really sensitive teeth and can't handle ice.

    Today was the first day I finally felt normal as I have been having daily headaches until today.  No hair loss yet, but time will tell.

    I had my first appointment with my radiation oncologist earlier this week and will have a bit over 6 weeks' of radiation after chemo ends - with the tail end over the Christmas new year period. Some women have shorter periods of radiation therapy but I was told that as I have over a D cup that I need longer. This time will pass... My radiation oncologist was very clear that my likelihood of recurrence after radiation therapy is the same as if I had a mastectomy, which was consistent with what my surgeon said, so I found that reassuring. 

  • kmakm
    kmakm Member Posts: 7,974
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    Hi @dougal. Sorry you had this drama; really scary. I'm glad you're feeling better now. I was never offered the neulasta injection with my TC. It seems to be very individual depending on your oncologist. I trust there won't be any issue next time!

    I had a mixed bag with my cannulas. My second chemo was. Nightmare with a nurse spending five minutes wiggling the needle round under my skin trying to find the vein. It was agony! She also didn't read my chart properly and failed to give me my pain meds in a timely fashion. I made it known that I didn't want to have her again, and I didn't. The NUM told me the nurse had been doing it for 12 years...

    Interesting about pain on chemo. I hadn't heard about that either.

    @Emim I was very rashy with chemo, all red bumps and spots round my neck and on my chest. Itchy.  But it didn't seem to depend on the sun.

    My surgeon told me the same thing re radiation therapy & mastectomy. Reassuring. K xox
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
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    @Emim I had the neulasta injection and got bad bone pain. As my oncologist explained to me it’s good as the marrow if producing the white blood cells which is why the big bones ache. I used panadol the first time which did nothing - the next 2 times I used panadine forte which was as quite good and the last cycle was endone - definitely ask your oncologist. I go the rash too - I just took an antihistamine for 2 or 3 days after chemo and they kept it at bay. xoxoox
  • Sarnicad
    Sarnicad Member Posts: 318
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    @Emim I had bone pain with the injection as well. I was told start at panadol then go to panadol osteo and then see. Fortunately panadol worked for me so I didn’t have to raid hubby’s panadol osteo

    @dougal I was only given the injection after the first round was a bit of a disaster with my white count. I’m assuming it wii now be part of my protocol