Strange Pain

Hi everyone,

I'm hoping that I can get some reassurance from more experienced people in the forum about a pain i am currently having.

I had my first EC 9 days ago following a mastectomy and diep reconstruction in January.  My side affects have been manageable and expected, allbeit a little underestimated on my part.

My main issues, other than nausea, seem to have been digestive.  I have had bad hunger and acid reflux adding to the sick and uncomfortbale feeling which got worse after ending my course of post chemo medication.  I then experienced constipation which just added a whole new level to the whole process! I think the steroids have been identified as being one of the main issues.  

I spoke with my nurse on Thursday who recommended lactulose to ease he constipation which I tried and had success on Friday.  I felt so much more comfortable and along with taking Lansoprazole thought that things were returning to normal for me ahead of my next round next Thursday.

During the day on Friday I was experiencing a dull pain in the buttock area, i felt bruised.  Then as evening went on i got a wave of quite intense throbbing pain at the very base of my spine, I took some pain relief which did ease it a little.  I then went to bed and the pain intensified.  I referred to dr google and it was suggesting that my symptoms were severe constipation.  I thought it odd as i had "sorted" the issue earlier but it also kind of made sense given my experiences up to that point.  I took something to help the problem but it did nothing which makes me believe that it wasnt the issue.

I tried to go to sleep but have been woken all through the night with waves of intense throbbing pain again.  I am now wondering if its anything to do with the Neulasta injection that i took 24 hours after chemo (8 days ago).  Has anyone else experienced this pain and had it confirmed to be the injection?  Is it likely to be that 8 days after having the injection or does anyone have any other suggestions as to what it could be?

 

Many thanks for your help

  • Hi [@Silverkaylah]‍ 

    I had similar side effects to you following my EC infusions.  But I was interested to read your description of pain, especially throbbing pain at the base of your spine.  I did experience exactly that after my filgrastim injections (I believe this is a similar drug to neulasta, and they both increase white blood cells).  After a few sessions of chemo my body seemed to get used to the injections and I no longer got the throbbing pain.  
     

    So my guess would be that it's the neulasta, but I'm no expert (and it seems odd for the pain to be so delayed - mine started within a day or two).  Worth being on the safe side and mentioning to your team, particularly if it's waking you up at night.  Chemo involves quite enough wakeful nights without the addition of throbbing pain!  Best wishes x
     

     

  • Hi [@Sephy]‍ 

    Thank you so much for your reply, it is a big comfort knowing that others have experienced the same.

    The actual name of the injection I had was Pegfilgrastim, I think Nuelasta is the brand name, so you are correct it is very similar to Filgrastim.

    I have a couple of added complications with my treatment as I have a blood disorder and have historically suffered from palpitations so I'm always overly concened about any new reaction.  I did have a racing pulse last night and have today had "flutterings" but i do think that they are more anxiety related rather than something to genuinly be concerned about.

    I was going to call the hotline number that I had been given but I've called it already this week and I feel like a complete drama queen who is over reacting!

    I did find it strange that this pain has come on so long after the injection but I wonder if its because my white blood cells are at their lowest and therefore my body is in white cell production overload (not a medical term obviously)

    Thanks again x

  • Hi [@Silverkaylah]‍ 

    sorry to hear you have other health problems to deal with.  Chemo (and the meds that come with it) does such weird things and it's difficult to know what's "supposed" to be going wrong and what isn't.  My heart rate got faster and faster so by the end my Fitbit thought I was doing 24 hour cardio sessions which I most definitely wasn't!

    One thing I learned too late was to alert my team to any side effects, rather than trying to cope alone.  I struggled with a burning, empty feeling in my stomach and oesophagus which no amount of Rennies or Gaviscon or dried crackers could relieve, then after a couple of months I told my team and they  prescribed Omeprazole which solved the problem in a few hours.  I did feel a bit stupid for having delayed, so good on you for getting your indigestion meds promptly!

    best of luck with the pain, I hope it's starting to ease off x

  • Hello Silverkaylah and thanks for posting, 

    I agree with Stephy, don't worry about calling the hospital hotline, that is what it is for and your hospital team would rather you got in touch than not.  

    This bone pain could very well be because of the Neulasta, but unfortunately I am not in a position to be able to confirm this so do contact your hospital team and get their input.

    Neulasta is filgrastim (a granulocyte colony stimulating factor or GCSF for short) which has been pegylated so it stays in the body for longer than other types of GCSF. This might account for the bone pain coming on now. But do talk it over with your team and see what they say. At the same time ask what sort of pain killers they would recommend .

    Our website has more information on GCSF at the link below:

     www.cancerresearchuk.org/.../g-csf

    I hope this pain is settling down a bit and that you can easily get some proper advice about it.

    Give us a call if you want to talk anything over, or number is Freephone 0808 800 4040 and we are around from 9-5, weekdays. 

    Take care, 

    Julia

  • Hi [@CRUK Nurse Julia]‍ ,

    I am so grateful to both [@Sephy]‍  and yourself for replying.

    I did end up calling the hotline over the weekend and my oncologist called me first thing this morning as a follow up.

    He confirmed that the pain I described and the timing does indeed point to the filgrastim injection.  He also confirmed, as you stated, that becuase I have the longer acting injection that is the reason for the delay.  My predicted lowest blood cell count time period was 7 to 10 days after chemo and that is when the injection would ramp up my cell production - this timeline fits in exactly!

    As this was my first round it is all new to me and is very much fear of the unkown; now that I know the pain is due to the injection I am very happy to take painkillers and deal with it as I know its doing a good thing.

    Thank you once again - having people like yourself and other cancer patients to speak with is such a huge reassurance.

    Sarah x