Hello, it’s been a while since I’ve posted. I was diagnosed in March 2018 with 3c high grade serous cancer. It was in both of my ovaries, I had 4 rounds of chemo and then debulking and then the last two rounds. I’ve been so lucky I think as although some activity was shown in some lymph nones in my pelvis in 2020 I was stable until 3 weeks ago.
I had a PET scan as my numbers kept fluctuating between 129 and 359, I got the results two weeks ago. The nodes in my pelvis are now 6cm, I have a node by my vena cava that has grown. A new node in my neck and it also on the outside lining of both of my lungs. I was incredibly shocked to find out how fast this had happened. My previous CT scan was only 3 months before and showed I was stable still.
Everything has happened so fast, I was told this on the Tuesday, had a picc line fitted on the Thursday and my first treatment of carboplatin only on the Friday. This first chemo literally knocked me out in the chair. I don’t remember any of it really. I struggled to eat or drink for the next four days and I couldn’t stop shaking. I was hot and cold and didn’t think it was right so I called the emergency number and they saw me straight away. To cut a long story short the said that they think the dose they gave me was too strong for me to handle. I’m hoping that when I see the oncologist later this week they will lower the dose.
I was wondering if anyone else as had this happen and what did they do. Also is there anything else I can do to help myself get through this. Any tips or ideas I’d be so grateful for, to be totally honest I’m really scared. xx
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Tay100
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I am so sorry this happened to you…hopefully if they get the dose right you will find it much more doable ( mine was pretty easy) . It’s really bad that they miscalculated your dose and I would be up front with how much this has impacted you and that you have considered whether or not you can get through it. It’s up to the hospital to reassure you that they will get it right, give you protective premeds and potentially a slower drip to help you feel more confident xx
You’re right I do need to let them know how I feel and how it effected me. I’ll speak to my consultant on Wednesday and hopefully she reduce the dose and be able to reduce the side effects next time.
Who knows it might be pretty easy for me as we’ll need time.
What Lyndy said about the pre meds is also vital. I had a bad reaction to one cycle and after that they successfully regulated my dose AND the speed in which it was delivered, plus anti sickness IV. So sorry about your recurrence and the fact you’re scared, we’re all scared in peaks and troughs. I had a scan last week and I’m dreading My results because I’m sweating again and have a weird cough. Yes I know it’s hot and I know there’s lots of tree pollen around!!! Anyway today the sky is blue the sun is shining, I’m in the country and it’s great to be alive- whatever is around the corner. Good luck and try to stay positive. X
Sorry to hear about your recurrence, Tay. I remember we went through our last chemo around the same time, in 2018. Dosage reduction happened to me the last time around too (Taxol reduced by 20%), and it helped a lot in terms of side effects. Hope it'll work for you as well.
I believe you are scared.. I was too, when I was diagnosed with a recurrence. It makes for a mental shift from 'hah! take that! chased you away for good' to 'maybe we have to make co-habitation arrangements for a while'. That said, it's been 4.5 yrs sice my first recurrence, so please don't get discouraged and dare to believe in the treatment working.
Any chance of surgery, maybe down the line (I'm guessing it might be a bit tricky right now due to the spread/proximity to vena cava)?
WIshing you the best for beating the recurrence back, and tolerating treatment. Thinking of you. xx. Maus
I do remember us going through it together as well. I feel so much better knowing that a reduction is possible and to still get a good outcome.
You’re so right facing a recurrence is far more scary I think than the original diagnosis. I’m going to take your words to heart and stay as positive as I can. There’s been no mention at all of any surgery so I guess that won’t be an option.
How are you doing, are you keeping as well as possible?
Dealing with fatigue but it's gotten easier since I reduced my work hours to 50%, so can't complain. Checkup coming up next week. Good luck with your treatment! xx. Maus
Hi Tay. When I read your post my first thought was ‘I remember my first recurrence being scarier than the original diagnosis’ so totally understand how you are feeling. My first recurrence was nearly 4.5 years after diagnosis and I then had a second about 18 months later, still here in my 15th year, 9 years NED this month. Hopefully with a reduction in treatment they will be able to bring you back to at the very least stable. It may be worth you discussing trials or maybe a parp with your onc. I wish you all the very best, Kathy xx
Hi Kathy, You’re so right, it is so much scarier with a recurrence, I just hadn’t realised.
You give me so much hope 15 years and still here and strong, amazing!
I will see what she says about parps, I need to read up about them myself. I don’t know very much about them at all, and what they do. I’m so very ignorant as I’ve had my head in the sand I think.
I wonder if it was an adverse reaction to the carboplatin which I got I was given medication the day before to stop this and it worked. Know quite a few of us do have an allergic reaction to carbo so perhaps ask if this could have been what happened. Every good wish x
Ooh, That’s something else I’ll need to ask about. I’m going to write a list of questions to take with me when I see my oncologist. I wouldn’t have thought about that, thank you!
Scared is the logical reaction. What you can do is educate yourself on latest Oncology research and trials and have a healthy diet and see anyone who can help...reiki osteopath phys therapy psychologist and other patient support groups . There's this one and cancer connect in usa. Good luck and God bless from paris
Ho Tay, I'm also on my 2st reoccourance too..with it all happening so fast didn't thry send you to nuclear medicine for a kidney test prior to the chemotherapy as my understanding this tests your kidneys to get the dosage of carboplatin. I had an adverse reaction to carboplatin this time even though I'd had it 2 years previously so they have now done it over lower dosage bags but alonger period of time. From 1 hour to 6 in total. Hope all goes well for your next cycle.
I didn’t know anything about kidney testing beforehand. I was weighed the day before when my picc line was fitted and they took my bloods for a baseline.
I’m sorry that you had an adverse reaction but it’s great to hear that it was resolved by being a smaller slower dose. I’m keeping everything crossed that the next time will be a little easier.
Hello Tay100, sorry you are having a reoccurrence, yes it is very scary and emotional. I had 3 reoccurrence and had a very bad rash break out all over my body that burned like fire. Oncology stopped the carboplatin and changed to new drugI ( forgot name) maybe they will change yours. God Bless you stay strong and positive you will get through this. Hugs
Yes Tay100, the rash was rough but it passed and all is good. I thank the Lord every day for another beautiful day of life. This is easer for me at this time because I’m cancer free for 4 years now. Somehow I live each day one day at a time and I’m so Blessed how God is working in my life. Stay strong and positive my teal sister. Hugs to you always XOXO God Bless you !!!
Hello Tay100 so sorry you are having a reoccurrence I am on my 3rd in less than 3 years. We have to keep fighting and living. I am curious why they haven't added Doxil along with the carbo? Yes had all the side affects that you had through out. HOT COLD constipation lack of hunger and just nausea for 4 days. Keep asking questions and remember each of us is different and handles the drugs differently. Also the cancer handles each drug in a different way it seems. Wishing you much positive energy, thoughts and strength! TEAL LADIES STAY STRONG!!!!!
Thank you for your reply. I’m so sorry to hear that your on your 3rd reoccurrence in such a short space of time. I do hope that you’re doing as well as you can.
I’ve no idea as to why I’m on carboplatin only. It was all my oncologist said I’d needed. I never thought to ask any questions about it to be honest.
I’m sending you oddles of positives thoughts and strength right back you you.
Tay, Knowledge is power........the more you know about your cancer and the different treatments available the better. Have you been genetically tested? have they determined any anomalies in your cancer it may be different than you weird I know. What kind? High grade, low grade, clear cell? also keep in mind CT scans only show large changes PET scans show the mm changes.......also the longer the remission the more options you might have for treatments as well as your body has the time to recoup
Hi there, I was diagnosed March 13th 2018 with high grade serous, stage 3c. Both ovaries were effected, one was 19cm and the other 21cms. The only test I’ve had is the BRCA test and I was negative. This was done shortly after my debulking in August 2018. This is my first recurrence, since then. xx
I'm really sorry you're going through this. I can speak to the speed with which this can come on. When I was first diagnosed, i had had a CT for smthg completely unrelated to cancer in August of 2019. Nothing. Then a mere four months later was going to get a colonoscopy, asked for a CT because of some very weird abdominal issues I had been having, and guess what? Cancer all over the abdomen, suddenly I am stage 3C!! It was so fast that even shocked my doctors. It does happen sometimes as a super speedy demon. Speak A LOT with your team about getting your chemo right, and YES to all the pre-chemo day before meds and hours before meds.
Thank you for your reply. You’re so right, when it decides to move it does seem to happen very fast.
I’m feeling far more positive now after the great advice I’ve been given by the lovely people on here. I also will have a list of questions to ask when I see my oncologist before my next treatment. So hopefully it will be a lot easier next time.
Hi Tay so sorry to hear what you are going through . I have just finished second line treatment for first recurrence only 9 months after first treatment. I had to have my dose reduced for the 5 th and 6 th sessions because of bad side effects . I will just add a couple of things to everyone else’s comments . Firstly it is your body and nobody can give you treatment you don’t want or can’t handle . Try to be assertive and insist on a reduced dose or a change of treatment . There are many schools of thought that suggest lower dose chemo can be more effective . It is less damaging to the body and allows the immune system to rebuild quicker to help with attacking the cancer .Secondly I am a strong believer that diet plays a role in feeding the cancer therefore it is important to follow a diet low in sugar , certain fats , and processed foods which are full of chemicals . There is an excellent book called The Cancer Revolution by Patricia Peat
which suggests that we need a multi pronged approach to getting n top of cancer and this includes diet , exercise , supplements , meditation , and a whole load of other things which one may or may not be able to include alongside the orthodox treatments the NHS provides . Apparently some of these treatments are offered as mainstream alongside orthodox treatments on the continent and many of these countries have a better survival rate than we do .
I would recommend everyone who has cancer to read this book . I hope that helps .
I’m so sorry to hear about your recurrence, especially as it was so close to your first line.
You’re right it is my body and I do need to get a whole lot better at standing up for myself and asking more questions. What you said about a lower dose allowing your body to recover quicker makes so much sense.
I have only just really started to think about food and my diet. I’m definitely going to download the cancer revolution you’ve suggested so I can read it.
I’ve started doing some mindfulness exercises and that is helping with my anxiety. I’m normally a positive person, I just got side swiped by all this.
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1st recurrence ovarian/ carbo/caelyx 
Recurrence for clear cell ovarian cancer
First post - my story so far.
