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Anyone recently diagnosed? Starting the journey.
68 replies to this topic
Posted 28 February 2014 - 10:48 AM
Thanks heaps, I've just added that to I-books and will read this afternoon.
Posted 28 February 2014 - 03:09 PM
Hattie thank you for sharing your journey and the advice.
What sort of regular check ups do you have to have?
Posted 01 March 2014 - 03:19 PM
A party is a great idea, you will deserve to celebrate in 5 years time.
Posted 01 March 2014 - 05:17 PM
I am having a massive kick ass party when I get out the other side. 5 years sounds good….you're all invited!
Posted 01 March 2014 - 06:14 PM
Ladies, Like hattie, I was diagnosed with breast cancer, what seems a life time ago, nearly 11 years.
And I too will echo Hattie's thoughts, take help when you can get it, don't be proud. People often don't know what to say or what to do, but really are not trying to be rude, it just seems that way, so when they offer say "can you please ...".
I will also add, I know you are going through a terrible terrible time, often the partners get forgotten. So hopefully some of your partners friends will remember them and take a bit of care of them as well.
I can't help with the children side of things, DS was only 6mths old at the time so really didn't need to tell him much.
I am just wishing you all the best.
Posted 06 March 2014 - 04:53 PM
I have been quietly following this thread. I was diagnosed with gallbladder carcinoma just before Christmas and started chemo on 7 January this year. Chemo is tough and hard work to get through but it has been worth it. I agree with PP's comments on taking help when it is offered - and not only help for you but help for your DH/DP as well - they are travelling this journey with you and I have learnt over the past couple of months that they tend to be the "silent" sufferers and need support as well.
Jules - hope all is well in your corner of the world and that you get great news today. Please let us know how you are going when you get the chance.
Edited by Hrumph, 06 March 2014 - 06:12 PM.
Posted 06 March 2014 - 06:33 PM
Thoughts with you Jules, hoping for the best sort of news for you!
Posted 09 March 2014 - 07:12 AM
Deb thank you for sharing your story. How are you going? Have you finished your chemo?
Posted 09 March 2014 - 10:42 AM
No - haven't finished chemo yet but have done 3 rounds with another 3 to go. So far I have been responding and my oncologist says it cannot be going any better - my tumour cell markers have fallen from 6000 to 587! Generally I suffer badly from chemo side effects a couple of days after chemo for 3 or 4 days then generally start to feel better until the next round. This round however I haven't felt as good - bad stomach pains which have me concerned. There is talk of more chemo after this lot but using "gentler" drugs (currently on gemcitabeen (sp?) and cisplatin (this is considered on of the nastier chemos).
How are you going with your treatment?
Has anyone heard from Jules?
Posted 09 March 2014 - 03:08 PM
I have heard from Jules, but I will let her do her own update.
Fantastic news that you are responding so well to chemo. Not good though you are suffering with side effects. Hopefully they will ease off. How often are you having it?
I am due to start treatment at the end of the month, radiation and chemo at the same time. I had my planning appointment the other day so have been tattooed where they will do the radiation. The plan is daily radiation for about 25 sessions with the chemo to run continuously. I did get a leaflet on what chemo it is, so I will have to do some research on it.
Posted 11 March 2014 - 04:21 PM
Just a bump, keeping Jules in my thoughts and wishing she got the best news possible.
Posted 11 March 2014 - 04:22 PM
Also hoping everyone else here is doing well as can be, so sorry for hijacking.
Posted 11 March 2014 - 06:00 PM
Sorry guys, straight after the appointment with the surgeon we left to go away, bush place where there was no internet access. Just got back!
It was good news! The surgeon agreed to do liver surgery and I am having the first one on May 9. My response to chemo was huge, over 50% reduction in the two big tumours, and the four 4 smaller ones could no longer be seen on the scan.
It was mixed news…when the team involved in my care had their meeting, they looked over my original scans again, and they found something else that they didn't notice the first time..a tiny shadow, but they think it is another lesion. That ruled me out for the re-section, as it was on a part of the liver that was going to be left behind after the re-section. However, he offered me a bit of a lifeline (it might end up being just that)….a series of two liver surgeries, where he effectively re-sects both sides of my liver in two separate operations (the left first, then give it time to regenerate, and then remove all the right lobe which is the "worse" one). This is not very often done, but he said that my excellent response to chemo means that I still have a "small chance" of a cure with this regime, and the bowel surgeon agreed to remove my primary cancer after all this is done, and believes he can get all of it. So, I have a huge 6 months ahead of me, but these guys are giving me every chance they can. They really want a cure for me, and at the very least, lots more time, and they are working hard to make it happen, so I am more than happy to put in the hard yards too xxx
Posted 11 March 2014 - 06:13 PM
Wow Jules I am so pleased for you that they can still do the surgery. I have been stalking for news! All the best in the next 6 months. It sounds like you are in very good hands. Will keep thinking lots of positive thoughts xx
Posted 11 March 2014 - 06:33 PM
Just wanted to say best of luck to all you ladies suffering with cancer. I couldn't imagine what you are going through but it is lovely to think there is a bit of support albeit internet bound but support is support. You are brave courageous women who put to shame the rest of us who complain about our lot. May you all get the strength you need to fight fight fight your battle with cancer.
Sending love and positive vibes to you all.
Posted 11 March 2014 - 06:40 PM
I agree . I think of you ladies often , and I hope you know that although you may not have met all of the people on this forum, or even any, you are in the thoughts of many people here every day.
Posted 11 March 2014 - 07:31 PM
Thanks. We're all just ordinary people though, thinking it would never happen to us...until it did! You just kinda have to get on with it, but yes, it is sucky! I never thought this would be me, used to see others diagnosed and think how awful, I can't imagine how they must feel. And beleive me, you can't imagine! I hope each and every one of you never have to know xx
Posted 11 March 2014 - 07:54 PM
Great news Jules. Anything that gives hope is worth holding on to.
Posted 11 March 2014 - 09:08 PM
Hi, I don't belong here, came through discussing- I work in cancer treatment and recently came across a really good you tube movie that would be appropriate to show your kids regarding radiation therapy. It's called "one of a kind! A guide to radiotherapy". It's spot on in its explanation of treatment and made for kids.
Hope you're all doing well on your journey, all the best for the future.
Posted 12 March 2014 - 11:20 AM
What wonderful news Jules!!! Sounds like you will have a full on 6 months ahead of you but what a fantastic care team you have giving you every possible chance at life!
How is everyone else travelling? I am sitting here in hospital having day 2 of my chemo...
Posted 12 March 2014 - 12:15 PM
I had more chemo yesterday and am pretty much just hanging out in hospital to see if anything happens complication wise (hope it doesn't of course)! I've had a couple of visitors which is great, I'm lucky to work in health care, so people are around to pop in, although I don't work in this particular hospital.
Great your tumour markers are so far down, my husband made a graph to put on the wall for mine & cheer me up!
Posted 12 March 2014 - 12:32 PM
I had my oncology planning appointment yesterday. I will be having day surgery Friday for my port to be inserted ready to start treatment on the 25th. Chemo infusion in the morning and then first radiation in the afternoon.
Good news about the tumour markers. A positive sign. Love the idea of the graph.
Julie great news following your appointment. It must be stressful in the lead up to each one. I have been told the same thing re menopause. My ovaries will be taken out when I have bowel surgery, so the chemo will just bring menopause on a bit earlier. Thankfully we were not planning anymore children, it would be heartbreaking if you were.
EB is playing up, so can't scroll, so the person who posted up thread about the youtube clip, thanks, I will have a look at it later.
Edited by WibbleWobble, 12 March 2014 - 12:40 PM.
Posted 12 March 2014 - 02:09 PM
GReat to hear everyone's update.
Wibble, if you are having a chest port prepare for a couple of very uncomfortable days as your chest and shoulders adjust. I had a couple of days of misery, in part from the procedure and in part because I was holding my shoulders stiffly because I was so conscious of this new bump on my chest!
INvest in a wheat bag or hot water bottle!
Posted 12 March 2014 - 02:27 PM
Whinge, grumble, grumble….just went in for my final chemo before my surgery, and I wasn't able to cope with the complete dose, due to nerve pain in my veins. Because my port had to come out due to being infected, this one was going straight in through a cannula, and my veins really cannot cope with this oxaliplaitin drug (platinum based). I struggled a fair bit the first two times (before the port was put in), but today was off the charts, and they rang my oncologist who told them to discontinue it, and that it was only a "bonus dose" anyway, as he was happy with the control that had been achieved with the chemo's I have already had, and of course, I still have my two weeks of oral tablets.
I guess I have to get it into perspective, I have achieved a lot through the three cycles I have had, and some people struggle so badly with the side effects of this awful (though effective) drug that they simply can't have it, so I have had three full doses at least, and some today as well, even if only a part dose.
Now I am home feeling like someone is holding a blow torch to my arm, and without a full chemo dose on board - annoyed!
Wibble Wobble, I am glad you are having your port inserted PRE chemo treatment. I had mine done between my second and third rounds, and because I was immune suppressed, I am sure that is why it just wouldn't heal, eventually becoming infected. And I presume you are having this oxali crap, which you definitely do NOT want going through a cannula. I agree with sakura73, it is uncomfortable in the days after a port insertion…my chest didn't bother me as much as the couple of stitches in the neck that I had, where they ran the tube upwards through the vein. And even though it is uncomfortable to do so, make sure you move your neck normally, it will soften the tube up quicker.
Hrumph, hope you are travelling ok. Where are you located? Few of us in Vic. We'll have to meet up some day and curse what went before us, but celebrate because we are here to tell the tale.
Julie, glad everything is looking positive. Once I reach remission, which I am hoping to by Christmas, I will be on many years of 3 monthly CT scans, due to having stage 4 cancer and the very high probability of a return. I am excited about the thought of ever having 6 monthlies, but having said that, a lot of people on my bowel cancer forum I have joined get very scared when they go from 3 to 6 monthly scans, as things can then obviously take longer to be picked up. I can understand that too..but I haven't even started living my life in 3 monthly blocks yet, and it still saddens me to think about it. I was SO future focused before…now….well, I can't be. I can't see it at all. Not being maudlin, just….realistic I guess.
Eternally, I wish things were going more smoothly for you, it's heartbreaking. I know I go to pieces when away from my kids, it must hurt so much. I LOVE the idea of the wall chart with the tumour markers. I still haven't got my updated tumour markers, blood form still in my bag…whoops. Oncologist just wants it before our next appointment, which is not for two weeks.
Edited by jules363, 12 March 2014 - 02:29 PM.
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