Well I finally got a telephone consultation with my oncologist yesterday, and as I suspected the cancer is back. Several lymph nodes in the pelvis and some stranding in the bowl. As I have no symptoms at present we agreed to leave until my scheduled appointment in June before jumping into treatment.
I had been concerned that because of my age - 73, treatment might be hard to come by, but he suggested that as I have been NED for two and a half years it would be Carbo again with Caelex rather than Taxol as I suffered with severe neuropathy last time. Any thoughts on this combo would be welcome.
I really thought I had got away with it this time, but hey ho here we go again.The onc said that he would expect me to be experiencing symptoms within three to six months, so I just hope that the Covid situation is looking more hopeful by then.
Jenny
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Oh Jenny I am sorry to hear your news. Sensible to leave it a little while before starting treatment. Very best of luck with it! xx
Sorry to hear that, my CA125 kept rising immediately after i finished carbo/taxol I was on watch and wait for 6months before a CTscan confirmed 1st recurrence, I started carbo/caelyx which I found very easy compared to taxol (which also gave me severe neuropathy in my feet) The only symptoms were fatigue for a few days after the first 3 infusions, as I am retired I just napped when I needed to. I did get very dry skin especially on hands but my hospital gave me some wonderful cream, I had a few mouth ulcers to begin with but found adult bonjela last thing at night worked very well. I had some taste changes but they have since returned to normal, I did not loose my hair but it thinned a tiny amount on top, no one noticed. I wish you every success with your next treatment, try not to worry about waiting a while, avoiding covid 19 is the right thing to do. x
Are you able to use the cold cap.It was suggested to me by the chemo nurse that I try the cold cap.My hair is okay so I'm pleased with the result.I have had my fourth infusion of Carbo/Caelyx. Wishing you all the best.
To be honest, hair loss is not the worst thing about chemo as far as I am concerned. I think I would find the discomfort and the additional time involved not worth the effort.
HI Jenny--I found the combo of Carbo and Caelyx easier than Carbo Taxol and you do not lose your hair. Also it was once every three weeks (or was it every four??) which was a very nice break in between treatments. I would say after the steroids wear off (2 days post treatment for me) I didn't feel great for two days, then started to return to normal and then had a long time of feeling fine before next treatment. It was very do-able. Wishing you luck when you start and I am sure it will give you good results since you had good results last time (long remission). oxoxox Judy
I agree about the steroids. I could not wait to finish them. As they are mainly for nausea which I never experienced they reduced the dose much to my relief. And I stopped taking them in the evening because they were making me agitated and I wasn't sleeping.
Hi Jenny, I know how you feel and I am sorry that you are in this position.It is interesting that your Inc. said he would expect you to have symptoms within 3 to 6 months. I am 75 & have recently been diagnosed with my first recurrence. However it is 4years since I had the original treatment, for womb and fallopian tube cancer. I am high grade serous. Like you I had a shock,this time there is a 6mm patch near left side of stomach,tiny amount top of left lung and a 1 cm near the original site. Like you I can wait and see with blood test and scan or zap with chemo. The first time around I had 4 cycles of carbo/ taxol. In a way I don't really want to lose my hair again. It appears also that I could be offered immunotherapy,but I need to delve into this further. Tomorrow I have a consultation with my Oncologist,so will know a bit more then. It would be good to keep in touch.Take care and keep as well as you can. Caleda xx
Hi Caleda4 , Sorry to hear you're in 1st recurrence - hope you can get immunotherapy. Could you please keep us updated on this. Thank you and Best Wishes. Gwen x
Hi, I was born in Kent, and brought up there, but have moved around quite a lot. We now live in Wales, so my nearest hospital is Swansea, and this is a new Oncologist who I have not met as yet due to this Corona virus. She seems very nice as I spoke to her a couple of days after an MDT meeting.
I did not realise that you were high grade serous.
I hear what you're saying, but have made the decision to wait for a couple of months in the hope that the Covid situation will have improved by then. I live alone, and things like shopping, getting meds, travelling to hospital etc etc is so difficult if you are feeling unwell from chemo and am not able to get help from friends and family.
I know that you had lots of problems during the DICE trial, which would have been a lot worse without the support of your husband.
I am already really down without any social contact every day, longing for night to come so that I can go to bed! Lying in bed feeling nauseous and weak, lacking the energy to make myself a cup of tea, frightens the life out of me.
I wasn't sorry to see the back of my husband, but can see that they probably have a use at times like this!
First of all I'm sorry for your recurrence. I spoke to myoncologist yesterday who told me the cancer services are back, so you'll be fine. As far as your age is concerned your a spring chicken compared with some people. Thank God they don't take it into consideration. Good luck and God Bless. Sue xx
I’m sorry to hear your news, it’s such a shock to be told it’s back especially if you feel well and have no symptoms. After my initial Carbo/taxol chemo at first diagnosis I was left with neuropathy in my feet and have never got the full feeling back. 18 months later was told i had a recurrence and had chemo treatment of Carbo/caelx but the caelx was too much for me and I told my oncologist it was making me too ill and I just wanted to take my chances with Carbo only. Regrettably, I became platinum resistant and my ca125 rose to 400+ by end of treatment and the tumour had doubled in size. I am now on letrozole to manage as the oncologist had bluntly said my prognosis was poor and there was no trials available. I have high grade serous and I did some research and found trials that I might have been compatible for but unfortunately since COVID everything is halted. I do feel positive about things though and believe there are options available which help. Sending you big hugs and best wishes, stay strong x
Hello Jenny, sorry to hear your news. God brought you through it once and He still has you here for a reason so stay strong keep the faith and He will bring you through it again. God Bless ❤️
Hi Jenny, sorry about your bad news. I had a recurrence after approx 7 months. My 3 tumours were rather large. 12.5cm 7.5cm and 4.5cm approx. After 6 months of carbo/Caelyx they were reduced by two thirds although not altogether so I still have the tumours although reduced in size. I have just started Rucaparib today.
The carbo/Caelyx was manageable after it was reduced to approx 60% Caelyx. I hope it works 100% for you Jenny. I didn’t lose my hair it just thinned somewhat so you could be lucky 🍀 I truly believe you will. Love
I am hopeful that I will get a bit longer with my new treatment, though I no longer look for a cure. I have lost several friends to this cruel disease and feel that I am always looking over my shoulder. I shall be running fast to avoid being caught!
I had the Tel. consultation with Oncologist today. I am going to have a biopsy, so that she can tell whether the current cancer is from the endometrial site or the fallopian tube site. Apparently there were two different cancers which I have never been told before even though I asked originally. This Onc. sent for the histology results which is good & the Clinicians have had a further meeting. She did say that I could have hormone treatment to hold it back if it is from the fallopian tube site. If it is the endometrial type then it will be other treatment.
The biopsy will be done quickly as there is not much going on in the ultrasound dept.at present. I will have to wait 2-3 weeks for the result,but at least I will know more quickly what is going on.
I am so pleased that you are feeling better today and not so alone and scared. Sometimes you just feel so isolated. I have a lovely husband but this is a great place to come to both for advice and it is a comfort to know that there is nearly always someone out there who has experience in one thing or another. Take care. Caleda xx
So sorry to hear you cancer is back, this must be so difficult for you in these are unusual times. I hope treatment goes well when the time comes. Your post did give me some hope as I have been having a bit of a time of it with my consultants who, after indications that my cancer may be back, decided not to progress with invedtigstions. This really frightened me because I had a very aggressive cancer (carcinosarcoma). Fortunately I eventually got them to speak with me and they are now going ahead with scan and testing CA125 again. Your post gave me some hope and reassurance as I have no idea what treatment they can offer. I can't have taxol anymore because I got neuropathy in hands and feet. I had carboplatin as well so from what you and some others have said I may have a few choices. Let's hope the oncology departments are getting back to some semblance of normal. Take care and I wish you all the best.
Hi Jackie. I am sure there are drugs in the arsenal for the future, it's just that sometimes we have to trust to trial and error.
I also suffered from severe neuropathy with the Taxol although now years later, it is only slightly in my toes. It was for this reason, that the onc suggested Caelex and Carbo when I commence my treatment.
My blood form arrived this morning - just waiting for my scan appointment so I can do both in one visit. Things seem to be moving. You hit it on the head about trial and error. This cancer is so rare they literally don't know what the best treatment is. When I first saw the oncologist I asked what they would do if the cancer came back and he said "we'll keep zapping it". If it transpires that the cancer is back I shall be interested to see what they decide to zap it with this time. I think with all this isolation I lost my sense of humour a little (maybe even got a bit pessimistic) but I think it's coming back now. I hope so- it went a long way to getting me through this the last time. Sending a huge smile. 😁
Hi Jackie. Glad to hear that things are moving. You will feel better once there is a plan. I hope they don't take too long to get back to you. I had to wait nearly a month for my scan results! Apparently doctors are being co opted onto C ovid wards.
Keep in touch as I find it helpful to hear how others are doing, and I pick up such a lot of helpful tips and information.
I never thought of that. I still don't know when my scan appointment will be. Could be weeks yet. I shouldn't really be surprised as it took nearly a month for someone to get back to me just to let me know what was happening regarding investigations. I hope I don't have to wait until my four monthly check-up as that has been put back from May to July. It all seems rather a long time to wait for what might he bad news. I'll just have to keep everything crossed and hope I don't have to keep pestering them for information. I really don't like doing that but I will if have to.
Sorry to hear your news I've just finished my 6th chemo had op after 3 for stage 4oc. To follow on the avastin. I am also 73 and awaiting ct scan where I hope to have a ned. I am also on taxol and experiencing effects but I don't think as much as you. Have no info on Caelex but best of luck
Hi. I hope your scan results are good. I had good results with Avastin, even though I still had some cancer remnants after chemo.
It's really good to hear from others who are in the same boat. This forum is a godsend.
Jenny
Hi Jenny. You probably have enough info in all the above posts but I'll give you my experience anyway. I too am 73. I had 18 months in remission & then my recurrence. My Onc wanted to watch & wait. I was reluctant as the reason we knew it was back was because the lymph nodes in my groin were swollen and so I thought the cancer had a good path to get to pretty well anywhere it fancied (it did travel to my left breast). However my onc's opinion was to watch & wait. He said he only had so many weapons in his armoury & they would work just as well further down the track as they would then. I had to trust him but I wasn't comfortable about it. Then, as luck would have it, he went on long-service leave & I saw his partner. He said he had an Avastin trial beginning if I was interested. You bet I was ! So he started me on Carbo/Caelyx plus Avastin. The caelyx was very difficult : dreadful mouth ulcers, small 'paper' cuts on my hands, barely enough strength in my hands to lift a cuppa, palms of hands turned a delicate shade of orange - fortunately it doesn't affect the face, or we'd all end up looking like Trump & that would never do. There were many more side effects & after the 2nd dose, my onc reduced the dose by 10%. It was still difficult but bearable after that. What was very good about Caelyx was that you knew exactly where you stood with it : after the infusion, you feel fine for a couple of days, then you have a day of travelling down - make sure you have a shower that day as you won't be up to it the next couple of days. Have foods pre-prepared as you won't have the energy to prep anything for those 2 days & possibly 3. Have a book at the ready & TV or whatever is your preference. Energy will gradually return on the next day & by the end of the day, you have the energy to shower again. I asked my onc if I'd lose my hair. He said 10%. I have very fine hair but no one noticed but me, so I'd advise against the cold cap, really not necessary with so many other things to consider. I've seen reported on here several times that Caelyx can be a little slow to get your CA125 down. But I have to say that the very best thing about it is that almost always, it works. It got me a good remission and the Avastin has kept me there for 5.5 years. You'll be fine. Best wishes. Pauline.
Hi Pauline. Thanks for replying.I know Caelyx is going to be difficult but I have got to give it a chance. The dilemma of whether to treat right away, or jump right in is a difficult one. I was the one who suggested delaying treatment, as I had researched beforehand, and the onc said that was what he would have suggested, unless my anxiety made that difficult. Who knows if I made the right decision, we are juggling balls here.
I got on well with Avastin and I am glad it is working well for you. We only get one shot at it here, and I have already had mine!
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