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Carboplatin diary - 3xAUC10 for Stage 2B seminoma

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  • Carboplatin diary - 3xAUC10 for Stage 2B seminoma

    I'm having 3 rounds of single-agent carboplatin at AUC10 as a primary treatment for a Stage 2B re-occurrence.

    This is a rare and still experimental chemotherapy regime, being trialled as an alternative to the standard treatments of radiotherapy or 3xBEP. The latest results from the formal phase 2 trial (which has been running since 1997 in the UK) were published in September 2012 here.

    I thought my experiences on this treatment regime might be useful for others in the future, given its differences the usual single dose of AUC7 carbo given as an adjuvant treatment at Stage1.

    Below is my diary from the first 'cycle'.

    4th April - Day1
    I was hooked up to an IV machine at around 2pm. The nurse couldn't find my vein in the back of the hand with the cannula and eventually gave up and went for a vein halfway up the arm (and got this first time).
    I had about 2 hours on glucose 5% (25ml/hour), then about 1/2hour of carbo (1160mg in 500ml 5% dextrose solution), then for around 10 minutes glucose then saline. All in all it went fine. The worst part of it was that the Carboplatin bag had come straight out of the fridge and as they pumped it in at 1000ml an hour it made my right arm feel quite cold!
    I had a slight tingling in the stomach when it first started but other than that I didn't notice anything. Treatment finished about 4pm. I was given 3 days of steroids (Dexamethasone), and around 7 days worth of anti-sickness (ondansetron and domperidone)
    I felt a bit nauseous on the way home but seemed to disappear after a quick sleep.
    Now it's about 6 hours later I feel ok really. I definitely feel a little bit weak and a bit pale but other than that it's all fine.
    Day2 (Friday)
    I felt genrally ok and so went to work. Felt a bit nauseous but once I had pills was ok again. Had some pain in lung area which seemed to come and go all day but I think this was digestion/bloatedness. Concentration and energy levels were unaffected.
    Day3 (Sat)
    Woke up feeling naseous but better after food. Feel distinctly weaker today, just less energy. More nausea in general today than yesterday. Metallic taste in mouth has been a lot more annoying. Last day of steroids - took last dose this morning.
    Day4 (Sun)
    No better or worse than Saturday really.
    Day5 (Mon)
    Worked from home and this was generally ok, was able to concentrate without problems.
    Day6 (Tuesday)
    This day was distinctly worse than all other days. I didnt sleep at all well, waking up at around 5am feeling very nauseous indeed. I suspect the chief cause of this was that I had stopped taking the anti-emetics as by now I thought I wouldn't need them. I took a dose and managed to get back to sleep without any vomiting. Concentration was difficult throughout the day, and I slept most of the afternoon. Taste in mouth was particularly bad.
    In general its been like a really bad hangover, as others have described.
    Day7 (Wednesday)
    Generally felt weak, dazed and confused. I spent most of the day reading or sleeping.
    Day 8 (Thursday)
    A definite improvement on Day 7, felt much better. I thought about going to work but decided not to push it and have an easy recovery day.
    Day 9 (Friday)
    On waking felt almost normal. I went to work and did a full day without any problems.

    In general the side effects seem pretty similar to the AUC7 diaries I've read on this site, apart from the worst days occur a few days later.

    I'm going to stop the diary here and will post again after I have round 2, which is on the 25th of April.
    Last edited by steveb_uk; 05-31-13, 01:24 PM. Reason: change dosage information

  • steveb_uk
    replied
    Post treatment CT scan

    All,

    Pleased to report that my post treatment CT scan showed both nodes to be circa 5mm so I'm back on surveillance.

    Its not quite the complete resolution of disease on imaging that I was hoping for, but judging by the all the carboplatin seminoma study papers they've extended the complete response category to include short axis of lymph nodes <1cm.

    Next CT scan is in a year, feels about right as most relapses from this treatment have been within that timeframe.

    My oncologist warned me I won't feel like celebrating - and he's absolutely right. Why is that?

    Steve
    Last edited by steveb_uk; 06-19-13, 12:30 PM.

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  • steveb_uk
    replied
    Round 3 Days 11-18

    Hi all,

    I worked no problems Days 11-14 but on Day 15 I began to notice that I was pretty breathless after mild exertion so they decided to get me in for a blood test. Results were 8.3 for Hemoglobin and 21,000 for plalelets. They decided not to transfuse - a decision I was happy with.

    I had my post treatment CT scan on Day 18 (more about that later) but at the same time I felt distinctly worse than on the Friday and by then I was also having headaches morning and evening. I thought that was mainly down to 'D-day' but I did notice myself getting a bit confused around the hospital in that I kept making wrong turnings. They repeated bloods and found Hemoglobin had fallen to 7.9 but platelets were down to 7000 so they admitted me overnight for both a platelet transfusion and 2 units of red. I sure did feel so much better the next morning - nice to be able to walk upstairs without having to catch my breath.

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  • steveb_uk
    replied
    Round 3 Days 1-10

    Because I handled Round 2 much better with no signs of any thrombocytopenia, after some discussion with my oncologist I managed to get a dose increase to AUC9 which I was very happy about. Perhaps because of this (and it being round 3) this round so far has been much harder than the other rounds. No vomiting, but horrible nausea with that horrible metallic taste persisted till Day 6, requiring anti-emetics up to this time.

    I'm now Day 10, but unlike other rounds I'm not quite back to normal and generally feel very weak. In Round 1 and 2 I was back to work by this point but I don't feel quite ready to do that yet.

    One positive thing I have noticed in Round 3 Days 1-7 was a much better energy level than either Rounds 1 and 2. This may be just different experiences on different rounds but on this round I made sure I got out and had short 10-20 minute walks each day which may have helped.

    Laying low this weekend generally avoiding people to avoid picking up any infections, as I imagine I'm in the WBC nadir. If Round 3 follows Round 1 and 2 then I expect to generally pick up energy throughout the week until my platelets hit their nadir around Day 15-20, where energy levels will take a hit again.

    CT staging scan is on the 17th of June.

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  • steveb_uk
    replied
    Hi Peter,

    Thank you for thinking of me. Treatment last week was delayed (again) for low platelets (61000, much better than last time but still too low to go ahead) so round 3 was today.

    Hope you had a great Birthday. My Dads Birthday is the day after you (he is 80 this year) and we had a great family party over here and because of the treatment delay I could enjoy it, so there was a silver lining to the cloud.

    Regards,

    Steve

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  • Grump_uk
    replied
    Final round on 23rd May.
    Steve,
    Just sending you some empathy. Hopefully you got chance for some sun and air over the weekend before the clouds and rain returned.
    Peter

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  • Grump_uk
    replied
    Originally posted by steveb_uk View Post
    Final round on 23rd May.
    Glad you got through round 2 OK and good luck with R3, my [~] so I will remember to give you some thoughts

    Peter

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  • steveb_uk
    replied
    Round 2

    On Day 28 (a week later than planned), my platelet counts had recovered to around 260 so the 2nd cycle went ahead.

    In general it was just a little worse than the first cycle. I made sure I was more anti-emetic med compliant than the first time so the occasional bad feelings of nausea that I had during Round 1 were not repeated (also the chemo nurse gave me extra domperidone so I had enough for almost 8 days. Having a large supply of mints to deal with the metallic taste also helped enormously.

    Constipation was a little worse, needed to take Laxido for around 3 days to get things moving again.

    By Day 10 everything was back to normal and I returned to work on Day 11.

    Final round on 23rd May.

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  • steveb_uk
    replied
    Originally posted by Grump_uk View Post
    Hi Steve,

    Having scoured the threads to find more and catch up the PM I sent you sounded even dafter!
    Assuming that you started round 2 today as planned I really hope that that all has gone as well as can be. Keep it up.

    Peter
    Hi Peter,

    I went for Round 2 yesterday as planned but my pre-treatment blood counts were not good. Neutophils were borderline (1.0) and red blood cells were fine but my platelet count was very very low - they called it a 11 which I'm assuming was a count of 11,000. Basically I had Grade 4 thrombocytopenia. (I did get some bruising on my legs but no nosebleeds/gum bleeding or anything else). The next cycle has been delayed by a week. After getting all geared up I was pretty gutted and pissed off, I didnt expect any treatment delays at all.

    I'm not so worried about the thrombocytopenia because 54% of the 61 patients in the trial had it at Grade 3/4 at some point. However as far as I can tell none had treatment delays (and I know its a very rare event to delay BEP cycles for any reason), so I'm obviously concerned about the treatment efficacy.

    During the trial 6% of patients had Grade 4 on cycle 1 but no platelet transfusions were done for Cycle 1. Its not clear whether the quoted results were from the blood tests done on day 10-14 or the ones just prior to pre-treatment. Carboplatin datasheets suggest the platelet nadir to be later than the neutrophil or red blood cell nadirs so it does imply the grading would come from the blood test taken just before the next cycle, and if this is true then it suggests the treatment was delayed for these 6%. Anyway despite all that there wasn't any mention of the possibility of platelet transfusions for me. I asked if I could have a 20% dose reduction on schedule (as per protocol for low platelets) and my onc said that there would be a 10% chance of death if he went ahead.

    So far the carbo treatment has been 100% effective for Stage 2A and 2B patients with no relapses, albeit on a small sample size. I guess I just have to sit it out and hope the delay isn't increasing the chance of needing 3xBEP further down the line.

    The next dose will be reduced by 20% (as per protocol) so I hope Round 3 will be on schedule.

    The funny thing is that apart from feeling a little more tired at the end of the day I have felt absolutely fine since Day 8.
    Last edited by steveb_uk; 05-31-13, 01:33 PM. Reason: swapped info on white and red blood cells, refined platelet count

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  • steveb_uk
    replied
    Hi Chris,

    Originally posted by ukboyuk View Post
    I had no idea of this trial. Good to know and seems you are in good hands, especially with the name "Bart's" and "Tim Oliver" on that paper.
    I'm a little surprised at the toxicity quoted, I'm curious to know how it compares to BEP/EP.
    From what I understand the trade off is that with carbo there is a much reduced risk of kidney damage/peripheral neuropathy and other long term effects but with worse myelosuppression during treatment i.e. worse haematological toxicity. I've now experienced this, more later.

    Originally posted by ukboyuk View Post
    Out of interest, which hospital are you at? Also, do you expect to lose your hair on this regime?
    I'm being treated at Mt Vernon in Northwood.
    Hair loss during this treatment is very unlikely. The paper that I linked to in the first post in this thread says that none of the trial participants had any hair loss (I've paid for the full version).

    Steve
    Last edited by steveb_uk; 04-26-13, 07:26 PM.

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  • Grump_uk
    replied
    Hi Steve,

    Having scoured the threads to find more and catch up the PM I sent you sounded even dafter!
    Assuming that you started round 2 today as planned I really hope that that all has gone as well as can be. Keep it up.

    Peter

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  • ukboyuk
    replied
    Hi Steve,

    I had no idea of this trial. Good to know and seems you are in good hands, especially with the name "Bart's" and "Tim Oliver" on that paper.

    I'm a little surprised at the toxicity quoted, I'm curious to know how it compares to BEP/EP. But overall, this is a great option to have on the table and you are doing your bit for science!

    Keep us posted, you never know who else will go through this and read your diary with great interest.

    Out of interest, which hospital are you at? Also, do you expect to lose your hair on this regime?

    Leave a comment:

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