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Moving straight from BEP to High dose TI-CE

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  • PeterC
    started a topic Moving straight from BEP to High dose TI-CE

    Moving straight from BEP to High dose TI-CE

    Hi everyone,

    A little background - im a 35 year old irish guy living in bangkok. I've been 'lucky' enough to pick up an unusual variety of TC.
    Here's my story so far:

    On May 15 2013 - i woke up coughing up blood - went to the hospital that morning and immediately got the news of what looked like secondary tumours in my lungs. This was pretty surprising as i've always been fit and run 4-8 kilometers a day with my dog.


    So we a a busy morning of CT scans and they found the following:
    I had multiple tumours in both lungs - the largest mass being 2.5cm*4.7cm.
    I had lesions in liver 0.3cm to 1.3cm in both hepatic lobes.
    Ill defined mass in right testis 3.5*3.6*4.3cm
    Matted heterogenous enhancing retroperitoneal nodes 4.9*7.9*11.5cm.

    By lunchtime they had good off righty...
    My HCG came in at 360,000 so we started chemo (BEP) the next day (16 May).

    I was diagnosed with Stage III C pure choriocarcinoma testicular cancer with metastatis to lymphs, lungs and liver (basically a germ cell tumour).
    The first few weeks were pretty tough and i dropped about 10 kg (from 82kg to 72kg)

    6/14 HCG dropped to 7,438 and lungs showed signs of reductions of tumours. I had already gained by 6kg. I've been genuinely lucky that the BEP doesnt seem to take too much out of me (apart from annoying amounts of hiccups!) so we performed this round as outpatient. Everyday i get out for a walk with the dog for an hour.
    I did day 1 to 5 of BEP but day 8 and 15 we skipped as the doctors wanted to do stem cell harvest - luckily we got 3 bags of 22m per KG of body weight.

    7/16 they performed CT scans and all the tumours were showing sign of reductions.
    My HCG continued dropping to 6,486 and in general the chemo seemed to be going well (and i was lucky enough to get pretty limited side effect - just more hiccups!).
    We had a file review performed by Sloan Kettering who recommended continuing on the BEP for a fourth round unless the markers started to rise.

    7/30 my HCG continued falling to 1827 - my weight continued to increase to 78kg.

    8/13 we reperformed the bloods and the bad news came in that the HGC increased to 3437.
    CT scans shows the lymph tumours were stable and the lungs continued to improve.

    The decision was made to move to High Dose chemo following the sloan kettering protocol - 2 rounds of TI (every 2 weeks) and then 3 rounds of TICE (every 2-3 weeks). This is new territory over here

    So we started TI that day - it went well but what i wasnt aware of the local doctor reduced the amount of taxol by 30% and ifosfamide by 50% as i was just coming off BEP. He made this decision without consulting the doctor at Sloan (nor informing me) so thats a bit of a worry (i only found that out august 26)

    8/22 No noticeable side effects from the TI (now i know i was on reduced dosage thats presumably why i felt so good).
    HGC continued to increase to 4797. Weight back to 80kg - i now have a huge belly

    8/27 HGC dropping again to 2251.
    Starting round 2 of the TI cycle today (this time on the full doses)

    Sorry to start off with such a long list but thats where we are.

    I'm going to try to organise a call with the consultant at Sloan Kettering to see the impact of the reduced
    first round of TI - anyone with any experience of that i'd love to hear about it.

    The plan is to go to the high dose of CE in 2 weeks. This involves 2-3 weeks in hospital each cycle (im due for 3) so im not looking forward to that too much.

    After that presumably i'll need to go for RPLND - im thinking of flying to Sloan Kettering for that - the 24 hours of flight time wont be fun but better to get it done at a center of excellence. I'm not sure at what point they might stop the high dose chemo and just move straight to surgery so if anyone has any experience of that too i'd love to hear it.

    thanks

    peter

  • PeterC
    replied
    Day 9 to 15

    Life turned a bit messier for these days. First I got fever then some nasty stomach pains which I needed morphine for a few days for. When they passed I had diarrhea every 20 minutes for about 3 days. Not a pleasant week but soon as my WBC came back to the normal range I was released. I also found that my lovely doctor had reduced the growth factor by half so that's why it was taking a long time fr my WBC to come up. So new hospital Tuesday for round 2...

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  • PeterC
    replied
    Day 8

    So today my WBC is down to 1 and platelets down to 45. Should zero out tomorrow and then its just the waiting game till my body restarts. I'm feeling fine and able to eat nearly normal amounts so that's good. Otherwise nothing else to report.

    Leave a comment:


  • PeterC
    replied
    Day 7

    So after spending most of yesterday asleep I feel pretty good today. Bloods are just dropping now (WBC at 7 and platelets at 100). Oxygen remains normal so I assume my hemoglobin is still holding up. Able to eat ok and the nausea isn't too bad. Now boredom is the major factor as I'm not a bit fan of sitting round this much. Hopefully just a week before the stems kick in and I can escape.

    Leave a comment:


  • PeterC
    replied
    Day 6

    Feeling pretty good today. Platelets at 90 and WBC at 20m. The doctors say they expect that to crash over the next few days then slowly recover as the stem cells take. At the moment I'm pretty happy though as I'm felling in good shape so hopefully the slump won't be too bad.

    Leave a comment:


  • PeterC
    replied
    Day 4 and 5 (stem cells back in)

    So day 4 was spent primarily in a sleepy haze. First half of day 5 was not much better. Got the stem cells back in and felt better that night (as they also contain platelets etc).

    By the evening of day 5 I was able to eat a chicken sandwich and some egg tarts (fat, sugar and eggs in a healthy combination).

    Bloods were coming back looking ok, platelets at 107 but oxygen at 98%

    Started the growth hormones today so hopefully they'll give a boost.

    I've managed to avoid any mouth ulcers so far by washing my mouth every couple of hours with apple cider vinegar - it stings but seems to work for me.

    Leave a comment:


  • PeterC
    replied
    High dose CE day 3

    Quick note on this one. Kidneys have been working overdrive so I get my highest dosage today (1750mg). Found it harder to eat today but managed to swallow down some pasta.

    Leave a comment:


  • PeterC
    replied
    High dose CE day 2

    Day 2 passed smoothly enough - still no side effects to note.
    I received 1500mg of carboplatin over an hour and 800mg of Etoposide over 4 hours (basically following the protocol).
    I drank 7 liters of water and received a further 6 via drips so I'm guessing I'm flushing the drugs out pretty fast.
    I'm washing my mouth out with apple cider vinegar every 2 hours which has totally stopped any mouth ulcers so far (I can feel it hurting random parts of my mouth but its working so far so I'd recommend it)

    One area of concern is the hygiene followed in the hospital sterile room. My room is pressurized and had double doors. The first hall way area is where people are supposed to change shoes and put on a mask prior to entry. Took me 2 days to train the nurses to stop then rolling in with trolleys from the outside.

    Unfortunately the bathroom is connected to the that hallway so I need to walk my drip through the dirty area to go to the bathroom. There are no antiseptics floor mats so I must be tracking lots of dirt into the room. I've asked my girlfriend to go find one but it would make the so called sterile room a bit of a joke.

    Last day of meds today and then 2 days before stem cell infusion. If anyone has any tips for that let me know.

    Pte

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  • PeterC
    replied
    High dose CE day 1

    So on a good note my HCG markers are down to 279 which is great.

    On a bad note I got a letter from my insurance company pulling financial support for my treatment as the doctor has not answered any of their queries. Seems he doesn't like paperwork. So I had to waste the weekend calling the insurer, finding out what they wanted and making sure they got it. I think of this as the amazing thailand experience.

    On Tuesday I got my kidney function checked and agreed with the doctor we're to follow the sloan protocol exactly. I now check all dosages prior to be given to me and for some reaso the doctor decided to not use the right dose (he wanted to go for 1000mg instead of the 1400mg the calculator says to use). No reason just he thinks he's smarter than the rest of th world. Soon as I get out from this round I'll swap hospitals as the additional stress of trying to manage the hospital is becoming too much.

    By the way if anyone needs a dosage calculator here is a very handy one
    http://reference.medscape.com/calcul...c-dose-calvert

    In the end I got carbo 1400mg over 1 hour and eto of 800mg over 3 hours.

    I imagine in america you don't need to keep an eye on things as much but for those of us in the lesser developed part of the world I'd use it everytime.

    I got a decent nights sleep (as you get when nurses come in for blood pressure every couple of hours) and no side effects so far apart from a little shakiness so here's hoping that continues. I drank 6 liters of water yesterday so hopefully flushing my kidneys that hard is helping (at least its keeping my fitness up from all the walks to the bathroom...)

    Leave a comment:


  • PeterC
    replied
    Just a quick update. I had my second round of TI last week so just wanted to report on side effects. I had it done as an inpatient (3 nights stay) and had very little in the way of symptoms during the 3 days (If I'd known in advance I'd have done it outpatient as I prefer to sleep in my bed without nurses who think 5am is a great time to start the day checking your blood pressure...)
    The day after I was released I had a pretty rough day with diarrhea and general tiredness.
    The day after I suddenly felt ok again so was pretty happy.
    The following week I've had odd symptoms that come and go, muscle spams, lack of appetite, sore bones (my hips were killing me for some odd reason) and aching joints that left me thinking I must be 70.
    This is also the first week since I started treatment that I felt it really hard to get any work done (I work online).

    All in all not a fun week but everyday I could go for an hours walk and have part of the day feeling human. For anyone entering this part of treatment it's something you'll get through pretty ok all in all.

    On a happy note my HCG dropped to 857 today so I'm very pleased that things seem to be moving in the right direction.

    I start the CE portion of the high dose on Tuesday so will let people know how that goes. Hopefully E numbers keep moving in the right direction.

    Leave a comment:


  • PeterC
    replied
    Thanks for the articles - seems there doesn't appear to be much difference in the results of either method (I'm guessing just due to the low number of patients). A family friend trained at sloan which is why initially we went that route so I guess we'll continue with the sloan method for now. I see that if it doesn't work out there isn't any statistical difference to then trying the other method but hopefully we'll not get to that.

    I'm due to start Tuesday with the CE portion so I'll let people know if the supplements I'm taking help with the platelets etc.

    Thanks again - it's really good to be able to access all the information here

    Leave a comment:


  • CancerSux
    replied
    A couple of articles to share (all should have access, let me know if you don't):

    Review of second line options

    IU HDC

    MSKCC HDC

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  • CancerSux
    replied
    I am looking to see any head to head comparisons (reported in the scientific literature) of the two regimens and will forward anything I find.

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  • PeterC
    replied
    Thanks Tracy,

    We're going the sloan Kettering route so should be 3 rounds. Even doing 3 rounds there is still a fair bit less etoposide in the sloan Kettering dosage (and no 3 months oral follow up with that). I've got a call with them this week to discuss but I guess they back their studies versus the IU studies. If my platelets recover in time they will perform it in 21 day cycles so I guess they get the intensity there.

    Leave a comment:


  • CancerSux
    replied
    For dosing, here is what NCCN guidelines say for the "CE":

    Carboplatin 700 mg/m2 (Body Surface Area)
    Etoposide 750 mg/m2
    administered 5, 4, and 3 days before stem cell transplant

    This is done 2x

    The MSKCC paper says that they use:
    Etoposide 400 mg/m2 daily on days 1 through 3 for all patients
    Carboplatin was AUC of 24 mg/mL/min over 3 days (hence the AUC of 8 per day)

    This is done 3x

    So the question is - are they planning on 2 or 3 cycles? That impacts dosing. IU does 2 rounds, MSKCC does 3.

    Leave a comment:

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