Neulasta bone pain SOS!

My scenario was, basically "Run over by a truck" feeling for 5 days each time,  which included 48 hrs no sleep and aching madly bones joints etc.

my plan, plenty of dvd's to watch, did not bother with sleep, had people organised for each evening meal to distract me, & lay on the couch.

I can't add regarding pain treatment, but it is a positive treatment that your bones are working really really hard to generate new white blood cells from your bone marrow all at once to keep you healthy,  and although painfull was better than spending 7 days in hospital with massive doses of antibiotics, hoping that you didnt accidently pickup an infection from anything [scary stuff] this all happened at the 1st round of taxotere. B

My scenario was, basically "Run over by a truck" feeling for 5 days each time,  which included 48 hrs no sleep and aching madly bones joints etc.

my plan, plenty of dvd's to watch, did not bother with sleep, had people organised for each evening meal to distract me, & lay on the couch.

I can't add regarding pain treatment, but it is a positive treatment that your bones are working really really hard to generate new white blood cells from your bone marrow all at once to keep you healthy,  and although painfull was better than spending 7 days in hospital with massive doses of antibiotics, hoping that you didnt accidently pickup an infection from anything [scary stuff] this all happened at the 1st round of taxotere. B

Hi Joey reading your story sounds so similar to mine. I started my chemo last Oct with an expected four rounds of Cyclophoshomide and Taxotere as well. Like you I also had severe reactions and was taken off it after almost going unconscious with my third treatment. I also had the Neulasta with that horrible, horrible bone pain. The only thing that worked for me was extremely hot heat packs on both my legs. My husband actually put a microwave in our bedroom to heat them up so that I did not have to struggle to the kitchen. Of course the heavy pain meds also helped me. I had hoped that they would knock me out for the first fews days of each treamtent so that I could sleep away the time but no such luck! I was then changed to weekly Taxol as well. This gave me severe nausea of which I never had with the Taxotere. I found having only one 'good' day each week hard to handle mentally with the weekly treamtents. After breaking down once again to my onc I only needed to have 3 of the Taxols after the 2 Taxoteres & 4 Cyclo. As of last thursday i am finally finished with my radiotherapy. It has been a long six months but I have hopefully kicked this things but! All I can say is stay strong as there is an end, it may not feel like it when you are still in the depths of chemo. You sound like you may be a bit of a character so keep up with your humour. I actually found my chemo days really social, it was the ones after that sucked!!

Re you leg pain I am also experiencing that as well in both my upper legs. They ache during the day but mostly over night which can wake me from my sleep. My onc did not think to much of it but my surgeon said that it may be related to the Taxol, of which I agree. After a lot of internet reading it seems to be a fairly talked about side effect. Here's hoping not one that will last.

 

Anyway all the best, stay stong.

Mel

I recall the excruciating pain in my neck  I used to get for about 3 days after my neulastia. I just took paracetamol and the odd nurofen. Like you guys Endone sends me loopy so stay away from it. Looking back I think taking regular Panadol Osteo would be good as it is a sustained release tablet and am sure you'd get lots of relief without drugging yourself up,( have my nurses hat on now) . Could be worth a try.

Sarah x

My journey sounds similar to Joy. The third hit of neulasta (mind you I was very grateful to be able to have the neulasta based on what it was meant for). The pain from waist down was incredible, quite overwhelming to the point where i could not walk as it felt i was walking on the bones of my feet (you know how many bones are in our feet - 26) Ouch and crunch. Curled up in bed the panedeine didnt touch the sides - hubby phoned my oncologist who left a script at the hospital pharmacy for him to go pick up some Endone. This seemed to do the trick.

All the very best

Maria333

Hi Girls I too had the bad bone pain, but mine only lasted a couple of days each injection. I had six injections and just used to count down the hours until the bone pain would subside. It is an excellent drug that helps us, but has some really crappy side effects. Hang in there, sending you both lots of love and support. Tanya xx

Hi Joy,

Yes the cost is incredible.  I'm covered which I am very grateful for.  I have had no infections so far at all.  It's strange that this is my 3rd Neulasta and yet the first time I've really felt actual agony.  It kept me awake all night (that and the hot flushes!)  Maybe it's because I've change to Taxol?

If it's still this painful tomorrow I'll call my oncologist.  I know what you mean about Endone.  I've had the same effect on it too. 

Just can't seem to win!!!

Jo xx