Herceptin and me: potential miracle medicines come at a cost

I have no doubt Herceptin is a potential miracle medicine for people like me who are diagnosed with HER2 positive breast cancer.  I can still remember my Consultant telling me how lucky I was that it had recently been approved for early stage breast cancer in the UK. She told me without it our conversation would’ve been quite different; without it she’d have said she was sorry because although she’d do her very best, it was unlikely anything she could offer would prevent the cancer coming back.  When cancer returns (metastases) somewhere other than where it started every day is a bonus. Although metastatic cancer can be kept at bay for months, possibly years,  it cannot be stopped.  The majority of cancer deaths are caused by metastases.  Few things scare me, metastases is one of them.

Like many other people prior to diagnosis I assumed (wrongly) that breast cancer is one disease.  Since being diagnosed I’ve read, researched and discovered just how complex an adversary it is, the role tumour suppressor genes play, the different survival rates for triple negative, HER2 positive and ER/PR positive subtypes and the further complexity of signalling pathways, gene over-expression, enzymes and timing of surgery.  When I first researched HER2 positive breast cancer the information I found was depressing to say the least.  Then I discovered further information about the use of anthracycline based chemotherapy in conjunction with Herceptin and the survival benefits of third generation chemo regimes.  Things looked brighter.

Last Friday I was due to have my seventh Herceptin infusion.  Herceptin infusions are less challenging than chemotherapy but in my case it seems I’m still prone to some of the rarer side effects.  A medical trial in more ways than one the Trials Nurse joked with me.  For several weeks I’ve experienced pain and stiffness in my joints. It began in the third and fourth fingers of my right hand. One day everything was fine, the next I couldn’t bend my fingers without a fair degree of discomfort.  Initially I dismissed it thinking I must have slept awkwardly and squashed my hand during the night.  The swelling, stiffness and discomfort didn’t subside.

Over the past eight weeks joint problems began to affect the fingers and thumbs of both hands, my wrists, ankles, knees and hips.  When I went to the chemo unit last Friday and showed them my fingers they called the Head of Oncology in Worcester, Herceptin was suspended and I was referred back to my Oncologist today.  Rarely can I go to hospital these days without someone wanting me to remove my clothes.  Monday 15th April was no different.  If it wasn’t so cold and wet in this country I’d consider naturism because some stranger has looked/poked at my body at least once a fortnight for the past year.  Continuing to waste money on clothing is almost futile… I have no modesty left to preserve!

After a thorough examination the Oncologist, Miss P, said I was unfortunate to be suffering these side effects and Herceptin is the prime suspect. I hadn’t met Miss P before but I immediately warmed to her, she was honest, straightforward and empathetic.  She admitted she has rarely seen such badly swollen knees or hands and it seems I’m one of only two women in our Health Authority area suffering from this level of adverse reaction to Herceptin.  As a result H and I are having a trial separation for the next three weeks; infusion seven will be delayed by at least a month.

Miss P’s aim is to reduce the inflammation in my joints so that we can complete the remaining Herceptin treatments. I want to continue. I also want to be able to use  my hands, walk and stand/sit without pain (or looking and feeling like I’m well over the age of 99 / related to the Tin Man from the Wizard of Oz).  To assist in this plan I have a new daily drug cocktail and new activity regime.

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Diclofenac is a non-steroidal anti-inflammatory. Miss P hopes three a day coupled with four doses of paracetamol, being more cautious about the amount of activity I undertake and keeping my feet up as much as possible will help reduce the fluid that has accumulated in my joints.  Reducing activity is frustrating – keeping active is supposed to be a good thing, it has survival benefits.  Irrespective of that, being cooped up again might well drive me insane.   Please God, who or wherever you are, take care of my mental health but most of all take care of my liver during the next 21 days because its going to get another hammering and has already endured much, much more than either of us bargained for.

The good news is that I now know the extra 9.5kg I gained in 3 months is all fluid, primarily retained around/in my joints and various soft tissues. The not so good news is that if the drug cocktail fails I’ll be referred to an orthopaedic surgeon with a view to draining the joints. I refuse to countenance an orthopaedic referral because 1. I’m not over 80 and 2. I’m not having more sharp implements stuck into me, especially into my joints.  The associative fear of needles I developed over the past 6 months would be pushed to a new level and its barely manageable as it is.

I’ve never seen so many packs of pills and this will be the first and last time. Drugs, do your thing and free me from this infernal inflammation.

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14 thoughts on “Herceptin and me: potential miracle medicines come at a cost

    • Hi Lorrie,

      I hope your final Herceptin goes without a hitch and wish you a smooth recovery from treatment. It takes a while for Herceptin to leave our system. I’m now almost 3.5 years from my final treatment and unfortunately still have problems in my joints. My knees are most affected and have continued to be painful and challenging when climbing stairs but they aren’t swollen like they were during treatment. Other joints that didn’t fully recovery are ankles, finger joints in one hand (why only one hand I have no idea) and hips. I’ve found yoga helpful as a way to maintain movement and have taken a “no nonsense” approach to the joints so probably push myself further than I ought to. Im not ready to give up the simple things in life, like a walk in the woods, just yet! I think it takes time for our bodies to adjust to all they’ve been through, including all the drugs, so give yourself time and be gentle at first. I know other women who’ve had fewer problems with joints and over time it’s diminished to a point where it’s barely noticeable. I hope you’ll find in a few months that things are much better for you too.
      With warm wishes for a happy, healthy future,

      Tracy

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      • Wow 3 1/2 years out. I’m not giving up. My goal is to walk the Way Camino de Santiago September 2018. Almost 2 yrs. It’s a goal for myself. I have lots of trails here in Oregon to walk to get stronger.
        Thanks for your kind words!
        Lorrie

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  1. Oh Tracy, I am so sorry to read this. You’ve already been through so much…

    I was one of those rare patients, too. They were so unfamiliar with these side effects that it actually took them a while to put 2 and 2 together. I would gain 8 – 10 pounds with each infusion and had such a difficult time with the side effects. I was fortunate to be able to finish — it just took about 18 months or so (because of forced breaks), but they were afraid to stop it completely because I was so strongly Her2 positive. One of the things they did — right before each infusion they would infuse a steroid, a diuretic and Benadryl. And then I took the diuretic (Lasix) for the week after each one. This didn’t help a ton, but I can’t imagine what it would have been like if they didn’t come up with this cocktail.
    I hope the drugs work for you. And I really hope you are able to finish. I know it’s a scary prospect to have this ‘miracle’ drug out there, but be told that you might not be able to finish it.

    I will be thinking of you — and hoping you get some relief. I am SO sorry for all you are going through… xoxo

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    • Thanks for your support Leisha. So far little improvement in the joints (or extra fluid). My doctor sent off for more blood tests… she wants to check my markers and a number of non cancer-related possibilities too. Its such a difficult balance – do I want to risk permanent damage to my joints or increased chances of cancer taking hold again. I don’t fancy either, they both sound daunting. I hope it is ‘just’ the herceptin and a break will let things settle down again. I’m going to mention the steroid, diuretic and benadryl combination when I see the oncologist again on 9th. Sending love, Tracy

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      • Tracy,
        I’m so sorry you haven’t had much improvement. What a big worry. I spent my entire Herceptin run (which actually took 2 years! — I just looked through my calendar the other day — I guess I had blocked the length of time out!) taking oral Lasix (the diuretic) to supplement the infusions of Lasix and the steroid when I wasn’t at the hospital. Maybe this is something they could add now during your break? It seemed to help pull some of that fluid off. They also did weekly Herceptin infusions with me in lieu of every 3 weeks because they said weekly would be better tolerated. I don’t know if this is even an option for you scheduled-wise, but it may be something to consider if things don’t improve.
        I’m so sorry this is happening. I know it’s an awful choice to have to face. Sometimes you just want something to go smoothly, especially when your life is on the line, so I can imagine you must be frustrated. I hope you start to get some relief soon — and I hope they are able to find some way to make sure you can continue.
        You are in my thoughts. I am sending hugs across the miles.
        Leisha xo

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  2. That conglomeration of causes, symptoms and side effects AKA cancer is such a beast. Sort of like a hydra when you think about it. Chop off one head and two more grow back. Unlike Hercules, though, we don’t have the golden sword and the clever simple fix. All we can do is keep working away and hoping to get ahead of the beast. Sometimes that means a step or two backward. Nothing left to do but persevere. In that I wish you continued strength.

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    • A hydra. That’s the most perfect description I’ve heard for cancer, it fits the bill exactly. I’m sticking rigidly to the new drugs regime as per doctors orders and willing my hands, knees and ankles to return to their happier selves 🙂

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  3. Not fun at all, I’m sorry you’ve had such bad side-effects. Maybe consider getting a lymphatic massage? I think groups like Macmillan (?) offer free massages – and helping the lymphatic system might move out the fluid? In any case, good luck to you. ~ Catherine

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    • Thanks Catherine – no definitely not fun but still not as bad as the disease itself. I’m lucky to have good medical staff here who work hard to balance up all the pros and cons of treatment and try to balance the short, medium and as yet unknown impacts. As a trial patient I’m also contributing to the body of knowledge about the rarer/less well understood side effects from Herceptin so although its not ideal, at least my experience will help others in future. Take care, Tracy

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    • I like walking as I know you do Elizabeth. Sitting still is difficult for me, its not really something I’m used to. I suppose I have to get used to it for the moment and wait for things to resolve. It will get better I’m sure… just like the weather is showing signs of becoming more Spring-like, at some point a bit of sunshine will come back into my days. Sending much love, I hope all is still going well for you and long may that continue.

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