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Thursday, 18 August 2011


It was Velcade day today and after much discussion and waiting, they having given me the Velcade but on a lower dose. This is because of the Neuropathy in my feet than I’m experiencing.

They were very busy on the ward today and a lot of faces I didn’t recognise, either that or the other patients have complained and don’t want to attend on the same day as me …. mmmm I didn’t think of that before!

Anyway it was quite a long day, arriving just after 9am and leaving at 3:30pm

One of the good things about today is that I got my hands on some Capsaicin. Dee the senior nurse (I must find out her proper tittle and write it down – Leave a comment Dee if you want … I know your read this Winking smile ) .. anyway  when she came into the ward this morning and saw me, she shouted over … now that’s interesting isn’t it; as she rubs her hands. Me being a bit thick said what is? She then went on to tell she was talking about the Zostrix and after reading my blog went off to do some research and read the clinical trials. She told me off for not reading them and said I only do half a job, which is probably true. Dee didn’t think that they would have it in the pharmacy and would probably need to order it in, but when Dave the pharmacist came in and I asked him about it, he said he did have Capsaicin which is the product and Zostrix which he hadn’t heard of is a make. Although Dee did say that we shouldn’t be fobbed off with the standard Capsaicin as it isn’t as strong, which I didn’t know (I would have known that if I did a proper job and did all of the research and read the clinical trials – I can hear Dee tell me now!).

Later on Dave came back after checking and said he had definitely got it in and there are two strengths. 0.025% and 0.075%  so Dee was right (as usual) that there are two types. I haven’t put it on yet, but will try it tonight to see if it helps and I will let you know how I get on. Thanks again to Denise for pointing it (send me an email Denise and let me know a bit more about you, I only know your name as you use the anonymous comments options Smile - )

Oh on the Velcade issue the Dr showed me a print out of what they use to judge if they should go ahead with the Velcade or not. I made a note of the website that it was printed off,  it’s the page with info on that they refer to is on page two after searching for Velcade. Table 3 on the page has the following information.


Table 3: Recommended Dose Modification for VELCADE (bortezomib) related Neuropathic Pain and/or Peripheral Sensory or Motor Neuropathy

Severity of Peripheral Neuropathy Signs and Symptoms
Modification of Dose and Regimen

Grade 1 (paresthesias, weakness and/or loss of reflexes) without pain or loss of function
No action

Grade 1 with pain or Grade 2 (interfering with function but not with activities of daily living)
Reduce VELCADE to 1 mg/m²

Grade 2 with pain or Grade 3 (interfering with activities of daily living)
Withhold VELCADE therapy until toxicity resolves. When toxicity resolves reinitiate with a reduced dose of VELCADE at 0.7 mg/m²and change treatment schedule to once per week.

Grade 4 (sensory neuropathy which is disabling or motor neuropathy that is life threatening or leads to paralysis)
Discontinue VELCADE

I’m at Grade 3 (interfering with activities of daily living) as it hurts/uncomfortable to walk and keeps me awake at night. Hence the reason they have reduced the dose. I will see what happens over the next few days.

I’m at Liverpool tomorrow so should have some further news about my transplant date.

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  1. I am the same Denise from Timswifesblog, Sean. With my new computer, I was having trouble leaving comments on certain blogs but it would work if I chose the anonymous profile. I am glad you got hold of the cream and am crossing my fingers that it works. Your situation is the most common thing Tim's docs deal with everyday: how to balance doses of chemo that will control the MM without causing such horrible neuropathy. Carfilzomib cannot get on the market fast enough for this reason.

  2. Depends which title you want!! My badge says haematology clinical nurse specialist, not sure how accurate that is!