Sorry girls, this is a long winded post but as promised I am writing with the results of my appointment today with the lovely Dr G. To be perfectly honest, I really don’t know what to make of it.
When I last saw him in July it was the day after my PET scan and the results had not been sent across to his clinic from the main hospital. He had merely an overview on the computer to go by. He told me then that the ovaries had increased in size, but not a lot, and that I had new nodes up on the peritoneum by the diaphragm. From that he concluded that the carbo/caelyx was not working so he was going to start me on hycamtim straight away. Since then I’ve had one dose of hycamtim then a 3 week break because of low haemoglobin and have just successfully had another two more weekly doses. I asked my GP to make an emergency appointment for me as I have low pelvic pain which has been hanging around for 3 weeks as well as a swollen lymph in my groin which has been slightly painful for some time.
As mentioned previously, Dr G cannot hide his feelings when I see him, even before I enter the surgery. Today he gave me one of his beaming smiles when he said goodbye to another patient and I was waiting outside. When we went in he was also smiling broadly. I thought, strange. He usually looks like that when I’m ok, not when I’m poorly. Hey ho. I told him about my pain and he had a good poke around but said he could not feel anything that related in any way to cancer and that the lymph node in my groin has nothing to do with cancer and isn’t a swollen lymph anyway. He said that I am worrying for nothing. So, good start. I had my list of questions and this time he had my PET scan in front of him. I asked if he would kindly go through it with me as I’ve never really gone through them with him before. Head in sand as usual. At first I wasn’t hearing what he was saying as it was totally different from what he said in July. But, it is the same scan! This time he’s telling me that I am still stable and that there are no new nodes. A totally different story than before (no wonder he was happy). I was so shocked that I couldn’t really speak and so never said, “You never told me that before. Have I stopped the carbo/caelyx for nothing then?”. Stupid me never thought about that until I read the report for myself when we were coming home in the taxi. The conclusion states (translated), “This day, scintigraphic examination in favour of the stability of the metabolic targets described compared to the previous review”. For info! Scintigraphy is the process of highlighting cancers with radioactivity.
All I can assume is that in July the CHU – which is our main hospital in Limoges where the PET machine is – transmitted to Dr G someone else’s results and he’s acted on that. So, have I stopped carbo/caelyx for nothing? Will hycamtim work? Why has my CA125 dropped by 30 points since July? I’m gutted that I didn’t twig sooner that something was amiss. Still, I’ll go with the flow and just run with it. What he did say was that my ovaries are fine now, every other organ is fine, there’s just one largish tumour still on the peritoneum and the lymphs under my arm haven’t shrunk. Although, cautiously, he did say that the PET does not show up microscopic cancer cells. He’s quite happy for me to stay on the hycamtin for now as I’ve no side effects and in October I’ll have another scan to see how I’m doing. He said that my CA125 is not really a good marker for me. It is the scans which indicate the progress or not of the cancer. Also, he’s not too happy that I want to try taxol or taxotere again, based on what happened to me last time and besides, he’s lots more chemo to try before that happens. I mentioned the taxol and taxotere only because I really thought that my cancer was progressing.
I remember phoning my children in July and having two of them crying on the phone. My hubby too was upset, as were my friends, so I know I didn’t dream it all. I’m not blaming Dr G as it wasn’t his fault I’m sure. I’m just so pleased that it wasn’t more bad news. I’m still shell shocked to be honest and have had a couple of glasses of wine to settle my nerves. I’ll pay dearly for that in the morning.
Dr G has written a prescription for a weekly shot of Eporatio 30,000 UI for my low haemoglobin. It is not low enough for a transfusion but should help with the fatigue and boost the old reds. This might be worth knowing for some of you out there who are suffering. So, that’s my news from today. Nothing like I was sure to be reporting. I don’t know what else to say really except that I’ve been thrown a little lifeline for the time being and will certainly make the best of it.
I do wish every single one of you all the best news that can possibly come your way. If I could wave a magic wand I would make us all cancer free in an instant. Lots of love to you all xxxxx
Written by
Kryssy
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Absolutely fantastic!!! Two lots of good news for two of my lovelies this week!! All my love and hugs!!! I’ll let my special person know for you!!! Xxxxxxxxxx
What a day you've had! Your story is a first and I can quite believe you needed wine to recover. What a blancmange but it can only get better. Good luck Gina xx
That is fantastic news , somebody screwed up somewhere I know but hey it’s much better than you were expecting .Hopefully you will be able to process all that this means for you tomorrow if you haven’t got a wine induced headache .sending love across the channel . Julia xx
I'm not sure if Eporatio is available in UK. I did a search on Health Unlocked and there are no posts related to it, except mine. If it works I'll let you all know so that you can start to make noises over there. I will try anything to shake off this tiredness and get some energy back. xxx
What an amazing tale Kryssy - I’m so pleased things have taken such a great turn, especially after the trauma of being told that things weren’t going in your favour. I’ve sen my consultant today, and am not feeling great about what is happening, but I’m going to spend some time digesting it all before I post.
Hi Neona. It is an injection once a week for 4 weeks. I'll pick it up today and ask the nurse to come on Mondays. I'm really hoping it does the trick and I get some stamina back. Have family visiting in a week's time, including Mischief Max, the 2 year old whizz, so would love to have more energy for him. strange how no-one has ever mentioned it before. xxxx
Kryssy, obviously very good news and no doubt a big relief for everyone. Very pleased for you.
In the past I have had to call the nursing staff to get the results of my CT scans analyzed prior to appointments since sometimes I can see that they have not been done and I don't want to go in without my physician having the actual results. Where I am they can read the results almost immediately if they get a request from the nurses at the clinic. This is of course all hindsight and I am not sure of how things work in France. It may not have been possible to do since you went in the day after your scan.
You have sprinkled questions and doubts throughout your narrative and I guess I too would be a bit concerned that your doctor made a treatment decision based on an computer overview which might possibly have been erroneous. Are computer overviews to be trusted? Was the wrong one transmitted? Not knowing if carbo/caelyx was not working or if the hycamtim was would be questions I too would be having. Hopefully your pain will resolve itself with a bit more time.
In the end all this may be moot if things are moving in the right direction. So much is uncertain and I guess we of all people have to be able to cope with lots of uncertainty and be grateful when good news comes our way.
Hi. I think we have a pretty good system here. Where it may have gone wrong is that I had my PET in the afternoon and my appointment with the oncologist was the next morning. Obviously the courier had not delivered the scan to his clinic in time. Now we think about the appointment back in July, while we were sat outside we could hear the doctor on the phone. He may have been speaking to the main hospital and asking them about my results. Maybe some idiot looked at the wrong scan or someone else's scan, I don't know. All I know is that I've been in bits for several weeks, as have my family. I have decided not to make a fuss to the doctor but if I see him at the chemo clinic then I'll mention it then in passing just to see what he says.
When I have my PET there are two doctors already reviewing it as I leave the scanner. I can see them through the open door. So much so that I've often wished I could go in and ask to see it too. The PET scanner is at the main teaching hospital in Limoges but my cancer clinic is elsewhere. The MRI scanners are dotted around the city and when we have those scans or X-rays we wait while they are examined and then either see a doctor or are given the all clear and given the scans and results to take away. There is never any waiting days or weeks for results. The only delay is when we have a mammography as a second opinion is always sought before the results are posted out, but we get to see the results before we leave with the understanding that until a second opinion verifies them we must keep an open mind. That's fair enough.
I'm just relieved that the results were not the other way around. I suppose mistakes happen, especially when the human element is introduced. No-one is perfect. xxx
Wonderful news! I really wish that you and your family had not had to worry over these past several weeks, though. Time to relax and celebrate now! 🎉🥂 So very relieved and happy for you!
It seems a bit perplexing. Hope things remain stable for the next scan and assume you can always go back to carbo / Caelyx in the future as it seems it was working after all.
That's very uplifting news Kryssy...i almost feel like having a glass of red to celebrate with you! Keep up your witty sense of humour and your positivity, and look ahead whilst trying to live life fully on a day to day basis. I feel that what destroys our collective happiness is the dread of what's to come re our cancer progression! If only we can just suspend our thoughts of tomorrow and embrace each day with all the enthusiasm and zest we can muster. Very happy for you Kryss!
Fantastic news Kryssy. So pleased and relieved for you. Be kind to yourself, particularly over the next few days as the adrenaline levels sink back to normal after the stress and worry of the past few weeks. Jo 🌺🌼🌸🌻🌹
That’s brilliant news but like You I’d now have doubts if stopping the carbo/caelyx was the right decision! Is there any way you can email the lovely DrG with some of your questions once you’ve had time to digest everything fully? Just think having those doubts for weeks til your next appointment won’t do your head space any good.
However, the great news is worth celebrating and hopefully you don’t suffer too much post alcohol xx
Fingers crossed the injections boost your energy too (I could do with it after 14 taxol I’m permanently a zombie couch potato) and you can run round like a loon with the little ball of energy that is Max 😁 the family visit will be good for your soul especially now you can all breathe xx
Thank you Bev. I should get to see Dr G one day at chemo clinic as he shares a rota for visiting all the chemo patients morning and afternoon. I'll probably bring it up then but won't make a big thing of it. I'm just pleased to have a little ray of hope for a while. So much looking forward to seeing Max. I think 2 is a wonderful age. They are like little sponges and soak up so much information. xxxxxx
Hi Kryssy that’s amazing and fantastic news, can understand you being in shock!
But I really think you should get a proper explanation why it is so different from July. Also if the carbo was working it may be more beneficial to be back on that as it is the gold standard drug as you know. I’m not a doctor of course and your oncologist may have good reason for keeping you on the hycsmtin but I think you should understand what that is.
But for today you can breathe deeply and enjoy the lifeline and live life! 💖. Love
Yay to smiling doctors and good news!! I hope you slept really well and the wine was good!!
Enjoy the positive turn. Maybe once you’ve had some time you could pursue finding out what happened in July. Although I can imagine you don’t want to expend energy where you don’t need to.
What an extraordinary situation, but so pleased it has evolved happily for you.......can’t help feeling cross that you had so much worry for so long though. Maybe you need a second appointment to really get a clear picture. Meanwhile have a lovely happy weekend 🤗xx
Oh my goodness, this is great news and not what anybody here was expecting, I’m more than delighted for you lovely lady and can only imagine your joy.
You are understandably in a state of flux given what he told you in July and I too would be less than thrilled if he gave you false news that caused you to have a really worrying time in the interim period, however, you now have much more positive news to grapple with, I’d run with it and embrace it. It’s also good that he says he has other options other than the taxol given the effect it has on you so that’s promising too.
I hope you have a fantastic weekend and that your head isn’t too fuzzy after the wine, enjoy the sunshine lovely and thank you for sharing your news, love and big hugs hurling their way across the channel ❤️Xx Jane
Hi. Everyone has said everything but I agree with BeeWild to email and get answers to your questions re. your carbo/caelyx etc. So happy for you and sending big hugs.
Thankful for your good news Kryssy - even drs & scans aren't always right.
Enjoy your wine! Valerie xx
Great news!
I once got a letter to my GP which referred to my gout. If it hadn’t been for that I might not have realised the medical summary was someone else’s! You’ll be joining the ranks of the naughty cyclists with that drug, so just watch you don’t get caught out speeding up a mountain. Xx
But lesson learned for me. I am at the start of my CancerWorld journey and still trying to make sense of it all. I am an ex civil servant though and I have already started collecting information, copies of prescriptions, my notes of meetings etc in my Binder Vol 1. So I will be asking for copies of everything at my next follow up meeting. I have not asked for my patient history before as I was a bit overwhelmed with it all but your experience shows that we need to keep our own records. It is also strangely comforting to have it for a filing geek like me! Knowledge is power!!!
Thank you all so much for your lovely replies and good wishes. I'm still a little in shock but hubby and I went out for the day - although typically the restaurant we wanted to go to doesn't open for lunch in September. Always happens to me!! We did get into one of our favourite bistros though and I stuffed myself stupid. Then we went to a little concert given by a beautiful harpist and handsome violinist in aid of one of our cancer charities over here. Hubby fell asleep - nothing new there then - but I really enjoyed the music and relaxing in the sunshine. Food and wine was served afterwards so now my poor belly is bursting.
Hubby and I have talked at length about what happened yesterday and have decided not to make a fuss. We remember now that Dr G was on the phone before we went into his office back in July. He was probably phoning the main hospital for my results and that's where the human element screwed things up. He didn't have a copy of the scan in front of him. Once it arrived at his secretary's office it was probably just filed away by her waiting for me to collect it. I didn't, as I didn't really want to see it. I wish I had now. As I said above, I'll probably see Dr G one morning at chemo clinic when it's his turn on the rota for doing the rounds. I'll mention it all to him then. I agree that maybe carbo/caelyx could have continued a bit longer but I'm going to keep on with the hycamtim as it's rather nice not having any physical side effects, except for the low blood counts, and hopefully the weekly injections will sort that a bit. I'm not one for making a fuss but it will get aired one way or the other. I'm just wallowing in the news at the moment. Haven't had a chance to speak to my boys yet but they are all due a phone call tomorrow. This time there won't be any tears, which will be so lovely. Of course, one day I'll probably be in the sh*t but for now I'll enjoy this little reprieve.
Lots of love to all of you. I think of you daily and only wish the very best for each and every one of you. It's a mad journey we are on but thank goodness we have "met" each other along the way otherwise it would be a very lonely journey. Thank you. xxxxxxx
I read your post twice. Generally in disbelief as I have had scan reading confusion in the past. I agree that Taxol probably isn’t the right drug. It’s not a big mop up drug and it’s very harsh.
The treatment you’re on, if it’s going ok I would stick with. I’d choose carboplatin but not caelyx.
Overall it sounds really positive I’m so very pleased for you. It does sound as if we could’ve had the party after all though.
I would jot down notes between now and when you next see him to help with clarity and peace of mind
Am lifting a cup of tea to you while peering out from under the impossible fringe, balancing a hot water bottle and trying to ignore sleeping beauty
Hello sweetie. Thank you for toasting me through your fringe. It means a lot. I'm not in remission by any stretch of the imagination. I've still got quite a large blob of cancer on the left, stuck on the peritoneum as well as in the lymphs by my right booby but at least I know that all other places are clear- for now anyway. I'm not foolish enough to think I'm cured but it's a good place to start a new battle. I sort of gave up a bit recently, as you know.
Once I can get a good routine going on the hycamtin I'll come over for a trip and YOU WILL BE THERE TO SEE ME.... or else. T says he'll stay home to get the house ready for sale so I'll be a free agent. Lots of girlie time. Yes, we could have had our trip in August. Told Dr G. He apologised but who was to know.
I hope you can be released from your fringe prison soon darling. Love and hugs xxx
Brilliant news Kryssy despite the roundabout way of getting it and having to take in some scary fake news along the way . Enjoy these special moments . You deserve it after all that needless worry . Take care
What a rollercoaster, Krissy, but overall some positive news. Phew, I'm glad. Was worried before.
Now... If only the pelvic pain could be addressed, you'd be in a reasonably stable place. Wish you continued success and absence of side effects. Many hugs. Maus
I'm beginning to think that I've upset my bowel by overdosing on gluten. I've been rather lax these last few weeks, not caring what I eat or drink and neglecting to take in all the good stuff. I thought, what's the point? All that healthy eating for nothing. I've probably got the candida albicans back too. It always surfaces when I am stressed. I'm back on track as from tomorrow so we'll see what happens. I'm shocked that I sort of gave up so easily. Having been given a lifeline, however short, I'll be a good girl from now on.
I hope you are feeling positive and strong Maus. Lots of love xxx
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