Well it has certainly been an eventful 10 days since my first chemo. It all started with a fever on Thursday night (the chemo day) which turned out to be something that was as a result of the chemo. Friday was fine, temp normal and energy returning during the day. Saturday morning at 5am everything changed. When I had gone to bed on Friday night my temp was normal, when I woke it was 38.9. So it was time to wake up my wife and go off to Frankston emergency. This time they put me straight through instead of leaving me in the waiting area with people vomiting and coughing all around me. I spent 9 hours at Frankston getting pumped full of saline and an assortment of antibiotics. The temp eventually dropped back down to 37.2 and they gave me the choice of going home or getting transferred to Peninsula Private Hospital. Only one option really, last thing I wanted to do was end up back in Frankston Emergency if my temperature spiked again. So I transferred and this was when the fun started. Thankfully Pen Priv has an oncology ward. By Monday my left leg had swollen up and it turned out to be a blood clot behind the knee. My temp went up on Tuesday so they put me on a second lot of IV antibiotics. My oncologist saw me on Tuesday and booked me in for an ultrasound of the bile duct (I had started to turn yellow). Wednesday morning I had a stent put in the central bile duct and things started to settle down. These were the good things. The bad things included: - getting plugged into the IV for upto 4 or 5 hours at a time. This happened every 12 hours, in between I was hooked up to it for an hour or so. -getting woken up every 2 hours to get my temp taken. this went on for three nights -sleeping on a very uncomfortable bed and being forced to lie on my back while the IV was connected. This ended up giving me back problems with the muscles down my right side cramping up - Tuesday night letting the nurse know that my back was sore and asking for a heat pack - Wednesday afternoon getting told that because I had a sore back I had been booked in for a bone density scan on Thursday. This really confused me. I have a history of minor back issues (and had chiro for almost 20 years). Nobody had bothered to ask me about what the problem was (it was muscular) and they just assumed that this was something that was brand new and had only just happened. My wife managed to get them to hold the scan until I had spoken with the doctor. After I had, he cancelled the scan completely. -Thursday evening I was told by two of the nurses that I would not be out by Christmas and that I should expect to be in hospital for weeks. After all, it was in my best interest to be kept in a 4x4 room on an uncomfortable bed and have my life completely taken away from me. I spoke with doctor on Friday (and my wife spoke with the head nurse) - between us we found out that there was never any intention for me to be in on Sunday. My temp was mostly normal (the daily spike to 37.6 and then quickly returning to normal-according to my oncologist, this was insignificant) My energy was returning as was my appetite. My blood markers were returning to normal very, very quickly. Basically, the stent was working and doing everything that I should. It was a very frustrating week, but also one that had to happen and I was glad that it happened while I was hospital. The best part about it all is that I am home for Christmas and can spend it with family and friends. I am up and about, active, eating to much and am now ready to start the next part of the journey. Not sure where it will take me, but I look forward to finding out. Back to the chemo program on Thursday. Merry Christmas all. Take care and remember that life is what you make it. Tim
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Super Contributor
Well now you can have a merry Christmas and I am sure you will after all that.
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Fantastic news that you're home for Christmas. Sorry you had to go through all that stuff. Have a great day, Tim.
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so happy that you were home for christmas 🙂
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jsbach, good to have you back! I will write here what my partner has gone through so this is not my advice nor my opinion. After the Whipple's the oncologist has recommended the standard dose of Gemcitabine and suggested that it is a tolerable drug. She has decided to proceed with it. Round 1 - OK, Round 2 - high temperature, ended up in Peter Mc for 4 days, high dose of very potent antibiotics, knocked her out quite a bit. Her oncologist recommended 80% of the standard dose during round 3. We have settled for 60% instead 80%. Round 3 the same scenario happened - 4 days in hospital, high temperature, very potent antibiotics, she lost 3-4 kg. Her stomach lining was affected by the drug and every subsequent time she would undergo the treatment she would have reacted slightly worse than the previous time. Her health was deteriorating rapidly. We have advised the oncologist that we would stop with the treatment. He thought we were crazy. In retrospective, (3 weeks ago) he admitted it was a brave call and more importantly the right one too! He admitted that each subsequent round would have had a negative impact on her recovery. Instead of focusing on the mainstream medicaments we have decided to reduce stress levels, cherry pick the right food and boost her immune system. She is doing fine and the only reminder of this condition is the big scar from the surgery. Merry Xmas and good luck!
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I am glad that things worked out for your wife and that taking the alternate path worked for her. Sadly, I am not able to have a whipple operation as the cancer is so far progressed that it is not possible. My options are chemo or nothing. While I know that there will be damaging side effects with the chemo, in my mind they are worth it if it extends my life. My predicted timeline is to not see christmas next year. This is something that I am determined to beat. The hospital trip was not related to the first round of the chemo. It ended being as a result of pre-existing problems that just decided to come to the fore. The blood clot in my leg had probably been there for a while and there had been signs that would indicate a blocked bile duct in a previous blood test. Just turned out to be my lucky (?) week. Things are now back on track. I don't know what the future brings with the chemo, but at this stage I have to try. Merry Christmas and take care
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Hey jsbach Thanks. I'd like to add that in your own arsenal you do have a number of weapons to fight it apart from the chemo treatment. I understand that you will undertake the treatment as many people would if they were in your situation but keep in mind that it will weaken you physically and it will weaken your immune system. Two things from her experience - light and regular physical activity of any sort may keep you just slightly stronger to fight it better. I know it will be down to motivation and especially on bad days you won't even think of going out doing something apart from staying in bed and recovering. It is not only a physical challenge but mental one too. Two, take/eat everything that will boost your immune system as it is the only thing that will keep you afloat. Organic garlic, paw paw, carrot, *she also takes American pawpaw tablets that are worth a look* Dr. Jerry McLaughlin, vitamin D, selenium (guess what - she has been taking it for a year and this was published today http://www.medicalnewstoday.com/articles/239684.php ) - read my diary regarding her daily nutritions she takes. It helped her. Discipline is important, and meditation (reduces stress) And read this - http://www.medicalnewstoday.com/releases/239588.php Wish you and your family best of luck!
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I wish you loving memories to hold close xo
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