Hello ladies,
I hope that you are as well as you can be .
After being on Rubraca for 15months, my cancer has now returned. It is in the lymph nodes behind the chest,where in fact I have had it before. These are only slightly raised but my Oncologist wants me to start chemo asap. I have had no symptoms at all.
The chemo he wants me to go on is Carbo/Caelex I have had carbo,but not the caelex, so I am looking for some advice if anyone can give me some.
Thankyou, Caleda
Sounds like your oncologist is doing all the right things. And taking action quickly hope the chemo does the trick for you. You sound very positive with everything which most certainly helps. Sending my love & prayers for you SheilaFxxx
I’m sorry it’s back!!! I personally found this regime much easier than carbo taxol. I especially liked the four week cycles because I was only sick/fatigued for a he first week, excluding the day after chemo, when I felt fine. I did ice my hands, feet, and mouth during chemo and then apply heavy moisturizer three times a day for the first week. I got some mouth sores but not the worst. I rinsed frequently with warm salt water and used gentle toothpaste. My platelets really tanked each cycle but bounced back again though they did lower the dose a couple of times. My hair grew slowly but I didn’t lose it. I hope it works for you!
Hi Delia,Thank you for the info on the hands and feet. I will do the salt water for mouthwash as I am a believer in that anyway. That is interesting about the hair to, as I was dreading that again,but on the other hand so long as the chemo works,that is the main thing.
How are you doing Delia? xx
I’m doing pretty well thanks. I don’t love being on Olaparib but it’s still doing it’s magic! Trying to make the most of this time. Xx
I’m sorry you have to go back on chemo again, Caleda. I had three I fusions of carbo/Caelyx for my first recurrence. I’m taking a six week break and plan to have my fourth infusion in a couple of weeks. I would echo Delia’s advice regarding moisturizer. I would put hand cream on soles of feet then socks and also palms of hands with cotton gloves or those thin plastic food handler gloves. I would do this before I went to bed when I needed to. I did get mouth sores, but gargling and vitamins A & E seemed to clear those up. My hair thinned, but I did not lose it all. The combo did reduce my liver mets by 30-40 percent. I’m hoping they will shrink further when I restart chemo. You can manage this combo. Best wishes from Louisiana,
Sashay
Hi Sashay,Thankyou for replying, as it is always interesting to hear other ladies views on these chemo regimes.
I hope that once you start back on chemo that your liver meets reduce to an acceptable level.
Best wishes, Caleda x
Hi. I had Carbo/Caelyx and it was a lot easier regime than Carbo/Taxol.It brought my CA125 right down and when I finished I went straight onto Rucaparib. Unfortunately my CA125 increased each month and I stopped taking it after six months.
Jenny
Hi Jenny,It seems to work for most from what I have read,but it is always nice to know how others have tolerated it. I am very grateful for your reply,and hope that you are doing ok. Take care.x
Sorry to hear this Caleda4 …. hope you are ok. I haven’t had carbo caelex…. hope it goes really well for you xx
Thank you Lyndy,I am ok, and I suppose I knew it would be back at some stage. This year I was looking forward to the summer,especially after the covid lock downs. Hopefully I will still be able to get out and about some of the time.
I am having my 4th covid jab next Tuesday and today I am going to the hygienist,so a busy time.
I hope that you are keeping well. Take care. Caleda.
So sorry to hear this. I haven't experience this. However, I had 2 enlarged lymph nodes appear in my chest part way through my first chemo. They nearly prevented my debulking op but my Oncologist insisted on them being biopsied. They turned out be non-malignant and not infected and were thought to be a sarcoid reaction and have since reduced during a break from chemo. The biopsy was done through endo-broncial ultrasound (EBUS). Just wondering whether yours have been checked out?xx
Hi MoriniHope you are feeling ok atm.
I am waiting to have that procedure done on lymph nodes in my chest area, near the heart which I’m slightly concerned about. Could you tell me how you found it? Did you have any after affects? The surgeon said I’ll have a drain in afterwards and may get ongoing palpitations because of how near to the heart it is. I appreciate it is a small procedure compared to many that we all go through but still it sounds a little scarey. I’m waiting for the admittance team to call and it will be in next 2/3 weeks. So would be grateful to hear of your experience
Many thanks
Claire xx
Hi, The EBUS leaflet sounded horrendous I think I was more anxious about the EBUS for some reason, even more than my debulking surgery, the nurses had to calm me down to fill in the registration/consent forms.
Mine was done under sedation, because the wait for general was too long. I have emetophobia (vomit phobia) so they didn't spray my throat but used more of an inhaler. I didn't feel anything, even though I started coming round towards the end of the procedure it was OK, I was just aware of the need to cough.
No-one mentioned a drain to me, maybe mine were in a different position? They let me out after about half an hour, I had very little discomfort afterwards. I ended up wondering why I had got myself in such a complete tizz beforehand!
This was a game changer for me because it enabled me to have my debulking op in Jan which in turn led to me being NED at my last scan.
Hope this has helped ease a little of your anxiety and I wish you well with the procedure xx
So sorry to hear this Caleda but the replies have been very informative and useful to know for us all. My chest lymph nodes are a problem and found it interesting what Morini said. Sending positive thoughts to you, know its a deep breath and off we go again and its hard. We are all behind you. Keep us up to date. X
Thank you Lizzieanne, I knew as most do that it would be back to chemo at some point,however I was hoping that I would get through this summer without it. Hopefully I will be able to do some things out and about et. We have a holiday booked end of May in Borrowdale,but who knows I might have to cancel this.I will definitely let you know how things go.
How are you now? Have you finished treatment etc.?
I feel really well in myself, have a good diet, exercise regularly,which I suppose helps.
Take care if yourself.x
Finished chemo end of December. One node in chest grown 1mm and other near tummy area reduced by 50 per cent. So am having a rest and then PET scan in May. Like you know most probably be more treatment. Meanwhile am feeling loads better and this wonderful sunshine helps. Do hope you get your holiday we are going in April. Keep us up to date xxx
I am pleased that you feel so much better,that is definitely a bonus. These nodes are a nuisance aren't they. I hope the pet scan is good when you have it in May,keeping my fingers crossed for you. I keep hoping that something else will be developed to help us all.
Enjoy this good weather while you can.Take care, enjoy your holiday in April.xx
Another journey, then back on saddle again. You will be even better
Thank you. I know though that you are right.
Hi CaledaSorry to hear you are facing a second recurrence. Your oncologist sounds like he’s on the ball which will be reassuring for you.
I am facing my first recurrence atm with lymph nodes in my cardiophrenic area, I assume that’s same as chest?! Interestingly my onc is not prescribing chemo now but phoned me last night to say she’s referring me for a camera scope into the chest area to biopsy and possibly treat it. So this sounds the same as what you’ve had? Was it ok? She was going to prescribe chemo but the last CT scan only showed a mm growth so they are now between a cm and 12mm in size. I’m a bit confused but going to wait to speak to the cardiophrenic specialist and see where we go from there.
Wishing you all the best with your next treatment. Keep us up to date with your progress
Sending hugs
Claire xx
Hi Claire,Yes they must be the same lymph nodes,but I only had a CT scan. They were raised before the second lot of chemo, so my Oncologist suggested having chemo again asap. The lymphs are not raised to much,but he wanted to hit them quickly. He did say that some Oncologists leave them for longer,but he would rather deal with them now. I have had no warning signs which is not unusual apparently.
I hope things go really well for you. Do let us know how you get on. Thank you for responding.
Sending hugs to you.x
Hi CaledaSorry the bugger is back , Rubraca didn't work for me ,within four months the cancer in my peritoneum progressed so I was back on chemo . I started carbo / caelyx last October ,just had my sixth. I've found it hard going , weakness, fatigue and for the last two cycles sore mouth and ulcers, my hair is thinner but no loss ,no one told me about the ice treatment ,but on a good note my ca125 was 155 in October and 18 after my fourth cycle,I'm hoping it will be even lower now , I see my oncologist for scan results next Tuesday .Please don't let my experience put you off , I've had good results from both Carboplatin and caeleyx , Carboplatin and paclitaxol but always reacted badly to them ( I'm fourth line) lots of ladies have found caelyx and Carboplatin easier .Wishing you well and hope you have an easy ride
Cheryl x .
Oh Cheryl,I am so sorry to hear that you have been so unwell,it is so horrible for you.
Is the 6th chemo your last? My Onc. Said you can have up to 8.
I hope that you will feel better in the next few weeks. You have done well with getting your CA125 down which is good news. Onwards and upwards.
Take care of yourself. Caleda x
Thank you Caleda ,sixth is my last ,the plan for me is to reduce it or keep it stable ,I'm having a break now to give my body a chance to recover, probably three months my onc said , after that I'm not sure ,he mentioned weekly taxol , I don't want to know yet .Hope all goes well for you .x
Cheryl, it is a good idea to have a break from all these drugs. So long as things stay stable which I sincerely hope they do for you.Try and enjoy the simple things in life,and treat yourself to something nice.xx
I will ,we are having a two week holiday in Dorset beginning of May ,bit worried about covid numbers but going to be sensible and risk it .x
Go and enjoy a lovely holiday in Dorset, I hope the weather is good for you,you certainly deserve a nice break. Stay safe and take care.x
Thank you .x
Hi there. Mine C come back 6 month after all clear while in Niraparib. They said its little still and caught it earlier and started Caelyx asap, on its own just 2 days ago. I cant have it with carbo because its less than a year so Caelyx on its own it is )) I can not tell you more about this drug because had it last Tuesday, but so far OK. They saying its tolerated well but not sure how its tolerated with carbo together. My main upsets its just i could sleep last night at all because of Dexamethasone they giving us to tale for 3 days but during a day this steroids works as a stimulant ( I was buzzing all day yesterday. Took my dog for 5 hr walk and wasn't even tired! but then could not sleep all night ))) Oh dear ....Woman next to me while on Chemo day unit complained about strong rush she has and terrible itch while on Caelyx, but then she said she is allergic to many meds and fish.....Am only worried not to loose my hair again . They refused to give me cold cap because apparently they not providing it with Caelyx ! She showed me the list what cold cup can be giving with (( I need to talk to my team about it. Am not giving up ! ))
Hi mines back again too. On surface of liver,spleen,bowel. I'm starting carbo/caelex Monday 21st. I was ok on carbo/ paxil no nausea or loss of appetite,so apprehensive to try this one. But, no choice have we? Best of luck on it 🍀🍀 xx
I am wishing you good luck for the 21st when you start carbo/caelyx. I hope all goes well for you. As you said we don't have an option but to get on with it.Fingers crossed it works.xx
Thank you 🤞🤞🤞
Sorry to hear this. I had carbo and taxol and l but was lucky not to have any side effects apart from tiredness, aches, and of course baldness! I found it was very do-able. Hope things go okay for you. x
Hiya sorry to read this. I’m on carbo/caelyx just had my 5th treatment. My side effects are nausea, which lasts up to 10 days. I just keep up with the anti sickness, constipation is a nightmare and the usual up all night on steroids for 3 days! 😳apart from that nothing else.I was told that my hair may get thinner but the chemo nurse said it is a drug where you could lose it all! So I have the cold cap. I’ve not lost any so far.
Good luck with it 😘
Thank you for your reply,it is good to know how other people get on,so appreciate you posting. I hope that you gain success with your treatment.x
Hi Caleda. Sorry to hear it's back again. I had carbo/caelyx for first recurrence. I had much the same side effects as others but I only had a couple of mouth ulcers and once treated they never returned. I carried on with the salt mouthwash just in case. I tolerated carbo/caelyx much better than carbo/taxol. Having the longer recovery period was great. I felt really well most of the time except after last infusion I developed repeated UTIs - no idea what that was all about. I didn't lose my hair but I felt it got a little thinner. It worked fairly well for me in that my CA125 fell almost to normal levels and nodules shrunk significantly; the main mass only a little bit but it was all stabilised for around 8 months and I felt pretty well in myself. Unfortunately it has started growing again so more treatment but that's another story. I hope this treatment goes really well for you. We're all rooting for you. Jackie.
Like you I think a four week break is better than three as it is a longer recovery period. Sorry you had UTI as these are awful at the best of times. Good that you were stable for 8 months. I hope that when your next treatment starts that you have a longer break following treatment.Thank you for responding I really appreciate it Jackie. Take care,wishing you luck.xx
Hi fellow warrior woman 💪 My first diagnosis was in 2015, recurrences in 2018 & 2021. I've just finished 5 cycles of carbo/caelyx. I had all the side effects mentioned above plus some stomach issues which I found very hard to manage. It's still not confirmed if they were side effects of the chemo or from the last operation (I've had 2 peritonectomies which included hysterectomy, splenectomy & Whipple procedure). Either way, my onco decided to cancel scheduled 6th chemo drugs & go straight to Avistin for maintenance. That was last Monday & all side effects have settled down & I'm feeling almost normal. Fingers crossed I'll stay like this for a long time. My last ct was clear & ca125 down to 6. Lowest it's ever been.I hear stories from women who have recurred after short periods & some who go for many years of joyful living. I'm hoping for the latter. Everyone's experience of the cancer is unique to them & that includes the treatment.
Stay positive & as healthy as you can be during chemo.
Love & hugs.
Irene 💜
Thank you Irene,I am pleased that things have now settled down for you,which is what we all need at the end of treatment. I sincerely hope that you stay free of cancer returning,fingers crossed. Appreciate you posting. X
Really sorry to hear this Caleda. I’m on Rucaparib too and I dread getting that news. At least your onc is on it and offering you a treatment. Good luck, stay strong. X
Thank you, I hope Rucaparib keeps you well, just enjoy life. I did do 17 months on that,but of course wished it could have been longer. Take care.x
Hi Caleda do sorry to hear about your recurrence. 😘 Rubraca kept my lymph nodes stable for a year before kicking off again ( brca neg) hence my op with Prof F in London. I did carbo/ caelyx before starting chemo and then the parb for s year begore it started to kick off. To be very honest it was a walk in the park for me and never had any symptoms until about my 4 infusion and then mild. My onc said I would not loose my hair and I didn't, it didn't even thin. I know our bodies all react different to certain chemos so fingers crossed you won't get many side affects. What she did prescribe for me commencing chemo was mouth wash corsydl lots of it and I would use it 4 times a day and I never had one mouth ulcer. I used neutrogena or E45 to moist up. Ensure they put cold bags on feet and hands before infusing the caelyx and hopefully you'll have no probs with feet and hands. Wishing you all the very best going forward...😘xx
Hi Caleda I'm fine thank you, not too bad. After my second debaulkibg with Prof C F in London I'm having mop up chemo of carbo and genzar 6 cycles. One cycle consists of an hour of carbo and 30 mobs if gemzar then following week 30 mins of gemzar again. Then two weeks later start the cycle again The prob was I had one cycle and my plateets crashed to 5 therefore had to have s platelet infusion. Next week my hemoglobin was really low so had blood transfusion following a magnesium infusion (I take magnesium supplements pet day 800) mg ) but doesn't appear to increase magnesium. They have now taken out the 2nd week Gemzar as my bloods just don't cope with it. I will have a post chemo scan when finished all 6 cycles I've had three do far. I had a post op scan beginning of Feb my onc said no cancer reported but a bit if thickening on bowel and rectum.Im seeing a colerectal consultant this Friday just to ensure all ok ok my onc sent my scans to him. When I had my operation to remove the lymph nodes Infront of my lumber on December by prof F she opened me up from boob to Pube again and said no residual disease found after she removed the nodes so I'm not going to worry or panic about scan My CA125 is 2.8 but to be honest it was that prior my operation. I have to have regular scabsy as my oncologist said your CA125 is always low and is a very poor indicator of recurrence and tells her nothing.. I really pray that you have very few side affects with the Caelyx and have excellent resuly. Keep in touch and let us know how you're getting on. All the very best. Xx😘😘
Hello Win,I had carbo/ gemsar in 2020 and managed the same system you started on,fortunately my bloods were ok.
Gosh you were very brave being opened up from boob to pube, I admire you for that. I hope everything goes well for you now. I think we all wish that the Oncologists could do something just to prevent any cancer returning. Do you usually go to prof. F,or was that for second opinion? I have thought if I wanted a second opinion I would choose her.
My chemo starts Monday 4 April,but carbo only,as my Onc. Is waiting for a letter to confirm that my heart is ok. My Onc. does know that it is very good but requires it in writing prior to my having caelyx.
I will let you know how I go on,and wish you good luck that all will be well with you.xx
Hi Caleda, no I don't usually go to prof CF it was a third opinion really not even 2nd. My surgeon in Birmingham wouldn't take the aorta lymph nodes out as deemed too risky nor would the Royal Marsden it was only Prof CF whom said it was going to be difficult but she thought doable. I know its such a worry just wondering when it's going to rear it's ugly head it's always there in the back of your mind. Good luck with the chemo on Monday and I do hope that you have limited side affects. Keep in touch and let us know how you're getting on. 😘
Well done, seeking 3rd opinion. It shows it can be done. I will only be having carbo on Monday as my Oncologist is waiting for the letter back from Cardiologist before I can have the caelyx.I am seeing my Oncologist on the 14 again.
I will let you know what happens. In one sense I just want to get on with it.
Take care.xx
Yes Caleda, I was determined to have these lymph nodes gone sooner or later! X
Well done you. Do you know whether you will get anything like ankle and leg swelling,or anything else?xx
Hope you don't mind me asking but what highlighted finding it this time? I started Rubraca in Feb. and was told no scans unless I developed symptoms. Good to know further chemo is an option. Good luck with it.
Hi Tilly mint,I had a CT scan last September,which was clear,even though my CA125 was rising. My Oncologist suggested a further CT in March as my CA125 was 160,and it showed that the lymph nodes in centre of body had increased in number and in size although not that large,but he decided the best option was chemo. I had no symptoms and feel really well. Apparently though this is normal until lymph nodes get quite a bit bigger.
I hope Rubraca works for you,and that you stay well. Take care.x
Thank you. Maybe my Oncolgist meant no ct scan if 125 not rising and no sypmtoms. At the moment it's still coming down thankfully and no symptoms. 🤞x
That is really good news,onwards and upwards. Take care.x
IT'S BACK
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