Hi
Wondered if anyone could share thier experiences with me??
I am currently having IV Vinorelbine with Herceptin for Lung mets, this is giving me the most horrnedous Phlebitis/vein pain and every session leaves me with terrible tracking burn marks along my arms. The pain is so severe, its keeping me awake at night. Ive been told they have damaged my verve endings with it.
Anyone else expereinced this? I had very bad problems with epirubicin a few years back and then again with Taxotere, but this is like having acid poured into my veins for me!
I know there is a tablet form of Vinorelbine but my trust will not fund this… anyone else having this via tablet form?
any knowledge/advice appreciated
Thanks
Jakki
xxx
Jakki - don’t you think you and I just deserve something to be straightforward!!
I understand completely. I had the same problem with vineralbine IV and no NHS funding for tablet form. The next HA along to me does fund vineralbine tablets which is so frustrating.
I know another lady where I’m treated who spent a week i hospital with this pain and if my memory serves me right that happened to you at the beginning.
The way they used to reduce pain for me when I was having it IV was that they would make sure my arm was really warm and would always use a warming blanket.
They would use a blue needle so that they could run the vineralbine in 6-7 mins also reducing the pain.
Inject hydrocortisone first into the vein and then have the vineralbine and use heat pads at home. The hydrocortisone really helped the pain.
I’ve now got another long line as my veins were packing up and the gemcitabine was almost as bad as the vineralbine for pain and it has to go in over an hour and then I have the carboplatin on top.
I wish our hospital did portacaths - jet would if I had MS or cystic fibrosis but not cancer - how mad is that!!
Is there another health authority that would fund it for you or another onc where you are or what about a line or portacath?
Wondering if it was worth contacting the manufacturers as they would obvioulsy like to promote their product.
Sorry - can’t be more help but blue needles, IV hydrocortisone and warmth made a big difference. Good luck and hope it’s doing the trick.
Hope you are OK otherwise
Kate
Hi Kate
thanks for the reply… your right… nothing is ever straight forward for you or i!! I did have a port a cath but it became so painful after i lost some weight after treatment ended it began to drag on my skin/chest and my vein in my neck into which it went into and since it was lying redundant at the time… i wanted it out… i dont regret that decision now as i really hated looking at it sticking up under my skin… i think i will eventually have to have a hickman line in…
your memory serves you right… i did indeed spend over a week in hospital with this pain after the first one - the pain was horrendous… nothing like i had ever experienced before…
I have heatpads put on my arms before, during and after the iv infusion - i have my own heat pad at home… i also get rinitidine put in before hand - not sure if this is hydrocortisone?? it seemed to be working but now not so!! They hospital use a yellow needle which i think is a paedriatric needle and i usually find the quicker they run it through… the worse it is for me…
With regards to my my trust… its a diificult one for me this… i have my treatment at one hospital but my trust funds it from another because my onc doesnt do clinics at my hospital anymore and i wanted to stay with him… confusing, but he supposed to be the onc to be with if your young and have BC in this area… I am going to kick up a bit of a stink with this if they refuse it… Its resulted with me having to take photos of my veins to put forward to the trust, failing that… i will take it up with the manufacturer…
How are you doing anyway Kate? hope your staying well…
take care
Love
Jak
xx
Dear Jakki
You seem to be having problems getting the oral medication of vinorelbine and our understanding is this should be an option for people with secondary breast cancer when there is a clinical need. Although the oral is more expensive than injections,this cost is offset by the saving of time to prepare the drug and administer it. If you would like to have details of a specific named person to speak with at the manufacturer just email our moderator. (Alternatively if you want to talk through with one of our nurses just email the moderater at <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%6d%6f%64%65%72%61%74%6f%72%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%6d%6f%64%65%72%61%74%6f%72%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> and we can arrange this).
Regards
Katie
Katie
Many thanks for your help re. the tablet form of vinorelbine… i will email the moderator today and request that information.
many thanks
Jakki
xxx
Hi Jakki
Im new to the forum and was just browsing through the messages when yours caught my eye, I too suffered badly with phleabitis, the nurses put the chemo through VERY slowly and flushed with large size saline, which helped, it did actually calm down slightly throughout the treatment, but I had to stress to each nurse who treated me about the phleabitits then on the last treatment one of them said “oh didnt he swap you to the tablets if youve suffered so much” a bit late by then!
My GP did give me paracetamol/codine painkillers which did help on bad days.
Hope your doing well
Sue xx