Next line of treatment

After consulting Dr Cathy Williams last Monday, this is how they want to proceed with treatment: Velcade and Dexamethasone, plus Lansoprazole and Aciclovir.

Velcade is administered intravenously, twice a week for two weeks, then one week off in a cycle of three weeks. Because it’s IV, I’ll have to go into Daycase each time. The infusion takes mere seconds, but because Velcade has a very short life – eight hours, it can only be made up by Pharmacy on the day.

They’ve warned me there may be a fair bit of waiting time, especially on the first day of each new cycle, as I will need to have a blood test and see a consultant first. The consultant then issues the prescription and it’s made up by the cyto-toxic lab. Even though it’s not chemotherapy, I guess it must be quite toxic. I’ll also have to wait for the other medication tablets which come from the regular out-patient Pharmacy. It seems that anything connected to Pharmacy involves a lot of waiting.

Velcade is a proteasome inhibitor, which may cause peripheral neuropathy – anything from mild tingling and numbness to acute pain in hands and/or feet. I’m not looking forward to that! Additional side effects may be postural hypotension, which is the medical term for dizziness when you stand up or head rush, also tiredness/fatigue and bowel problems.

Neuropathy is the main one that they’re concerned about and each time I go, they will be asking me questions to monitor if I’m being affected. If so, they’ve said they will cut the dose, but neuropathy can begin after treatment has finished. I do already have it very mildly, which they reckon was from taking Revlimid, but that only started a few months after the initial treatment was over. Postural hypotension will also monitored by checking my blood pressure sitting and standing before giving me the dose each time. Today I was fine on both counts.

Dexamethasone (aka Dex) is a steroid given to complement any chemo-type drug to help it do its job. So, on the same day as the Velcade and the following day, I’ll be back on the 10 little tablets that I used to take during the initial treatment period. If you recall, they made me very manic, creative and insomniac. Time for blog writing, I guess! And here I am after Day 1, at 8:30am, not having slept a wink all night.

They give Lansoprazole to protect my stomach from the harshness of the drugs (as previously) and Aciclovir (an anti-viral) is to prevent shingles, which is another possible side effect of Velcade.

Not only do I have a chart to keep track of what to take when, but I’ve also reinstated the use of my Medi-memo, as it’s not straightforward. Numbers-wise, there’s nothing like as many tablets as last year, but with the main drug having to be administered in Daycase, it makes me feel like a patient again – harder to forget I’m ill.

Each time, I go in for anything involving cannulation, they put a hospital wristband on me, but they never cut it off before I leave, so today I wandered off to T’ai Chi afterwards and found I was still wearing a piece of gauze taped to my hand and still wearing the wristband. How to look like an escapee!

I’ve been feeling so sad, angry and shocked about the transplant failing and having to go back into treatment, but today I was slightly calmed when I told Joy, my T’ai Chi teacher about this next treatment. She told me that when she was being treated for breast cancer over ten years ago, the first treatment hadn’t worked. So they gave her different medication which is generally used for more advanced cancer, but it was effective for her. Ten years on, Joy is now living quite well, still clear of cancer and although she only began learning T’ai Chi after the cancer treatment was over, she now teaches it… very gently and compassionately.

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17 Responses to Next line of treatment

  1. Simon Hancox says:

    Thanks for sharing Jet. Love the final paragraph re Joy; a major positive to come out of something not so positive. Hang in there girl 🙂 xx


  2. Meg Williams says:

    Back on the roller-coaster then! Is this an actual therapy or are they preparing you for another transplant? I hope you don’t have to take the Dex for too many days at a time because lack of sleep can be very demoralising whereas short bursts of creativity are a bonus.I believe T’ai Chi is excellent for stimulating the feel good factor so I hope you can keep it going. I tried it once but it’s far more physically demanding than it looks!!
    It’s good you can voice the negative emotions alongside the positive ones, that’s healthy.
    Sending love. XXXX


    • Hi Meg
      Yes, this is an actual therapy, but the remission it might provide is generally short-lived, so once remission is achieved they will want to move on to another transplant. More about that in another update.


  3. Mavis Nevill says:

    Hi Jet
    Glad they have got next line of treatment on the go. I do hope it is as successful as your Ti Chi teacher’s. Is there any possibility of you having the Velcade by injection which is supposed to help counter PN? I think a couple of folk on Myeloma UK Web Site are.

    I know what you mean about being as patient again. Doesn’t “escaping” feel good. Let’s hope this line of treatment leads to a very long escape.

    Love Mavis x


  4. Deb Gascoyne says:

    Hi Jet,

    I am so sorry to hear everything that you are going through at the moment. I have changed email addresses so hadn’t seen your updates and didn’t realise you had relapsed. I think you wrote about it very clearly and I’m not surprised you’ve been shocked and upset about it…I think we would all be the same 😦

    I hope that your Tai Chi’s experience is the same for you…..

    Mavis above is right about taking velcade should push for that if you have the energy! Whilst you hopefully won’t get the neuropathy, as someone who did, it isn’t nice if it is avoidable. I think you can have it as long as you aren’t on a trial?

    Anyway, good luck and I hope your friends are around you supporting you while your head is all over the place.

    Love Deb x


  5. Eden Morris says:

    it sounds like such a grind, just that whole thing of hospitals, waiting, meds, timings, after effects etc. It fills every part of your body and mind, doesn’t it. So happy that you got the pens n pencils out, tis good to find your ‘artist within’ and see how all the emotion translates into art. I do hope that you have discovered the joy of glitter. Much love, hon x


  6. Sandra abraham says:

    Hi Jet, glad your getting your treatment as soon as!!! But it must be hard to start all over again !!! I can imagine how your feeling !!! Hope things go well for you I’m thinking about you xxxx Sandra .xxx


  7. Snip says:

    Heya, Jet.

    I was on the Dex/Velcade thing all last summer. I have two things to say:

    1) You are going to have really big mood swings on the dex, and there is literally nothing you can do about it. Warn your friends!

    2) Is subcutaneous injection available for the Velcade? If so, PLEASE go that route… and if not, beg for it to become so. The side-effects of Velcade are as much as 50% lower with Sub-Q as with injection… and there will almost certainly be side effects. Neuropathy is the big one, I think. I have it, and it appears it may be permanent (it’s been a good 6 months since I have had any Velcade injections). Also, for the neuropathy, Gabapentine is somewhat useful in reducing the symptoms. I’ve also been recommended to get accupuncture, but you need a therapist who is familiar with neuropathic therapy. and I have not found one.

    Upward and onward, my dear! I hope and expect you’ll be around for quite a while yet… just don’t lose the fighter attitude!


    • Thanks for your comments John.

      I have to say, I don’t really like the language of “fighting” cancer, but appreciate your wish for me not to give up.

      I was on Dex in the initial treatment last year (RCD), so am very familiar with how it affects me. I didn’t have mood swings too badly, but was very hyper and couldn’t sleep. As for getting Velcade subcutaneously, I will write more about that in my next update.

      Hope your treatment is going well. Sorry, I’ve not kept up with your blog – I didn’t get notifications, but I’ve just noticed the email subscription facility, so will be reading from now on.


  8. Catriona Yule. says:

    Ah Jet, tough times for you. I can imagine your T’ai Chi teachers experience must have really help…this is a set back not a dead end. Not much I can offer except I often think of you and wish you strength, resilience and encouragement.


    • Thanks Cat. Your supportive comments are really appreciated and let me know that I’m not so alone, so what you offer is much after all.
      I hope your move to care for your dad goes well. x


  9. Lesley says:

    Hi Jet, it’s Lesley Towl, our paths used to cross at the YMCA…..
    My husband had his 12 months scan in December 2011, no sign of his brain tumour!! it’s probably having a sleep after all those HGV miles he used to give it……………We celebrate everyday as we know his tumour will come back at some point as for his brain cancer there is no cure:( so we enjoy all the time, hours, days, minutes, we spend together. Considering we were only married in May 2010 we haven’t known each other that long….but guess what…he still drives me nuts……….just like any other man he says “it wasn’t me” and “are you making a brew?”……
    Jet, thank you for giving us your time in sharing your life through your diagnosis, treatment and survival!!! We are truly honoured to be with you and we wish you luck, love and happiness and guess what ‘a golden ticket’……….chocolatate lovers know. xxxxxxxxxxxxxxxxxxxxxx


    • Hi Lesley
      How lovely to hear from you and of course I remember working with you last year. I’m so glad to hear your news that the tumour is currently undetectable. I hope it doesn’t come back for quite some time and if/when it does, there’s another treatment or trial available that is effective and not too devastating to go through. Sometimes the treatment is worse than the disease, isn’t it? What more can we say, except that what you’re doing in enjoying the time you have is all we can do. So carry on! Hugs to both of you. x


  10. Hi Jet,
    Sending you love, hoping it helps.


  11. wow, what a lot of drugs and side effects, suppose it has to be done. thanks for sharing Jet, we would never know how much intervention there is in this illness otherwise, and how much they understand and can do also. glad you are still doing ‘life’, and haven’t been swallowed up by depression or anger.


  12. Thanks Pauline, for continuing to read the blog and for your supportive comments. I really appreciate hearing from you. x


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