I've had an appointment with my oncologist today ,its left me reeling and my husband is a wreck , although we suspected it was going to be bad news . The cancer has spread to my liver , I've been offered carbo gemzer not sure I've spelt that right . He also sais shall we talk about time , I say yes ,he said he couldn't be sure but the way the cancer is behaving probably about a year . I have had a lot of pain recently and felt very tired, if I have the chemo it would be fifth line so he said it may not be as effective as previous times , I don't know what to do ,can anyone tell me about carbo gemzer, side effects sound awful , I don't know if im strong enough mentally or physically to do this again .
Cheryl .
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My heart breaks for you, can you get a second opinion Cheryl, can you ask about immunotherapy not sure about the treatment you.have mentioned but l do know its all expensive treatment so unless he thought it would work lm sure he wouldnt have offered it you. Please get a second opinion different oncologist different ideas and opinions. They told my husband 3 months he's still with me with pancreatic cancer he was unbelievably ill 40 years ago,but he got through it. So l know its possible lm not suggesting that you have no quality of life and feel poorly just get the right advice through different eyes. Your in shock today , l know when l was told l was Incurable l was devastated but with my positive head on lm doing ok thank god and l pray that you will get the right help ,& advice .Please god the same for you. I send you love & hugs which hospital are you under a new trial might help .SheilaFxxx
Thank you Sheila , I forget to ask about immunotherapy ,so I will phone his secretary and ask if he'd phone me ,so that I can ask all the questions I forget,im at a local hospital ,so far its been brilliant ,im thinking about a second opinion .x
Dear Cheryl l wish you success and hope,, please let me know how you get on. I had a very restless sleep myself last night. Always a worry when we visit the hospital isnt it. God bless, your in my thoughts and prayers. If he says no definitely get a second opinion. What area are you in lm at Christie's mcr. Good luck Cheryl. Love & hugs SheilaFxxx
so sorry wish I could help you, all I can say is are you under a specialist hospital for your specific cancer if not I am sure it will be of help. If we had known when my mum was first diagnosed we would have gone to the Christy hospital, It does make a difference. Also has your profiling been done to see what is driving the cancer and to see if there are any clinical trials to match. Mum had her profiling done and they found what was driving the cancer and a clinical trial that sounded really promising to match this mutation but sadly she was to weak to try. If we had of know about the profiling we would have made sure this was done sooner, standard hospitals don’t give you things that are available and it was only with researching that we found out. With you, you must be reasonably strong to try some more chemo or something else as they have offered it to you. Keep you chin up and sending a big hug Ali xx
Im at my local hospital, they've been great so far , I m thinking about asking for a referral elsewhere but not even sure I could cope with the travel at the moment ,lits if questions I didn't ask so going to request another appointment or phone call .x
I’m so sorry to hear your upsetting news, Cheryl. I have not had Gemzar. I hope there is a promising clinical trial that will help and that will not have intolerable side effects. Sending hugs, prayers and good wishes your way.
Hi Cheryl. I’m so sorry to hear yr news. I had carbo/gem for my second recurrence. Unfortunately I reacted to the carbo and can no longer have it but stopped to cisplatin/gem. It’s was harsher but doable. I’d defo seek a second opinion. I wish I could give you a big hug (and your hubby). Do let us know how you get on xx Kathy xx
Thank you Caleda ,im thinking about asking for a trial ,thing that worries me is I don't feel at all like traveling , Manchester would be easier than London. X
I can understand that you don't feel like travelling . I would never of thought of going to Manchester,because i originally came from outskirts of London. However having had a chat with my Macmillan nurse a few weeks back,she told me that several patients had been to see Prof. Jayson and felt better having spoken to him. I am intending to go on the train,and then get a cab to the hospital. I really wish you the best as you have been through so much. x
I was sorry to read your news. I did cisplatin plus gem for my 3rd line chemo - I’m now on 5th with weekly Taxol plus avastin. It had spread to the liver but it appears to be working. I went to see liver specialist re operation to remove section of liver affected but he agreed with my oncologist - do the chemo first and we’l l see. Is an operation an option for you? Anyway, the platinum/gem is very doable. It’s a bother doing half the gem one week and the other half the following week, but....
I wish you all the best and do try to keep positive.
Thank you Erinna, he said surgery wasn't an option , because while I was recovering and unable to have chemo the cancer would have progressed in my peritonium ,im thinking about a second opinion .x
Hi there.So sorry to hear the news yourself and your husband are struggling with. I have just 2 weeks ago had a 2nd recurrence within months confirmed, had to stop niraparib, and start on steroids and 2nd tound of chemotherapy to possibly shrink recurrence around bowel (resection) and possible small area around liver. Now have bad nausea.Will have to have a scan to see if Calex/steroids shrink the disease.
it's such a shock coming to terms with information re spread and uncertainty re treatment i know,so all my thoughts and prayers. Know nothing re the drug mentioned im afraid, but do keep up updated. Am sure there's always more hope/ options than we think initially. I do hope your oncologist continues to look at options and would seek a second opinion if i was you .Thinking of you both xx
I hate this effing disease & how it makes us all feel so helpless sometimes. You have been such a strong and resilient fighter and I know that there always comes a time when we feel like giving up but as they say, it aint over until it's over. Give yourself some time to come to terms with this news and then find out what else is available to you, whether it's another opinion or trials or this new drug. I'm sending so much love and strength to you Cheryl.
"I see your pain and it's big. I also see your courage and it's BIGGER."
Thank you so much, im thinking of asking for a second opinion , but my head is all over the place at the moment . I know I'll be calmer in a few days and better able to make decisions.x
Hi Cheryl, not sure I can add much to what others have said. Sending you a big virtual hug 🤗
Any decision you make needs to factor in what will make you content and at peace with the world, for some that is committing to treatment but for others it is not. Whatever you decide, make sure it’s right for you ❤️
Hi Cheryl Sorry to hear your news - I am under Prof Jayson at the Christie and definitely worth asking for a second opinion with him. Also any possibility of Clinical Trials which you could also ask the Prof about. Sending positive vibes to you. Gwen 🙏🙏🙏
My sister was at Christie’s and they were fabulous but we did go for a second opinion with Christina Fotopoulou in London. My sister was too ill to travel so it was done between the oncologists. I contacted Professor Fotopoulous secretary and went from there. I’m not saying London is the best option for you but oncologists will work with each other and will not be put out if you ask for a second opinion. Ours was not an option and treatment was continued at Christie’s with the same care.
They know that you and your family need to do what they need to do. We have no regrets.
Thank you ,the thought of asking for a second opinion is daunting but has to be done I think, im leaving everything until next week when I'll be a bit calmer .x
I am in very similar situation and was offered Rotterdam Regimin from my 2nd opinion doctor at the Christie.
After long soul searching I have decided to stop active treatment as I am so sick of feeling sick.
I am frightened about this final chapter but have support from the palliative care team and local hospice.
I, too could not stand the thought of the travelling for treatment, more cannula in my battered veins and the shocking toll that the chemo takes on me afterwards.
It's just as courageous a decision as continuing with treatments and you will have a gut feeling which is the best decision for you.
I'm so sorry you're going through this as well ,thank you for taking the time to reply , you're a brave lady ,my head is spinning at the moment, I don't know which way to go ,im thinking about my husband as well , he's a wreck , I know I should be doing what's right for me but after 53 years together I want whats best for him too , a bit of me says keep fighting ,bit of me thinks give up and get it over , but you've been through all these emotions yourself , wishing you a peaceful time , sending love .
It's the hardest decision I've ever faced. The thought of my hubby and sons is always paramount and I'm not ready to die but somehow for me it is right.
I do wish you a calm and positive journey and I do hope that one day women will not have to face this cancer at all.
Hi Cheryl, I'm so sorry to hear this news your head must be all over the place. I think you're right in taking time to take stock and once you're feeling calmer getting a second opinion from Professor Jayson. In the meantime sending you a massive hug, love Kerry xx
hello Cheryl, I’m so sorry you have had this news. I know how devasting it will be because it’s exactly the same news I too got yesterday. Like you I shall be starting my fifth lot of chemo in a similar time frame to you & will be Carbo Gemzar.
Although I’ve been having some abdominal issues I was putting it down to Avastin I was having as maintenance and didn’t want to think it was the flipping cancer back after only 4 months off chemo.
Unlike you I was not brave enough to ask about time frame, my hubby and I already know that it is limited but we still cried a bit last night.
Has your onc said when you will start the treatment, can you have a little bit more of a rest to gather your strength and do some nice things? Also can they give you any meds to help manage the symptoms you’re experiencing, pain is very debilitating and exhausting. If getting a second opinion would help make the decision then maybe try to do that too.
We need time to process this news and I couldn’t make a decision there and then. I’m seeing my doc again in 2 weeks but he did say if I’m still functioning at this level than we can delay it so hopefully we can visit our family in Holland for half term. I think for me it is not a question of if I have it but when, holding onto the thought that if it gets too tough then I will stop and reconsider.
Sending you much love and strength and gentle hugs that I hope will help.
Thank you Jan, im so sorry you're going through this too ,its shite isn't it, my chemo if I have it will be in a couple of weeks, my heads spinning at the moment , don't really know what to do , im sure you're the same . Im getting a lot of abdominal pain so don't feel like doing anything ,my GP gave me co, codomol ,he thought I had diverticulitis ,but consultant thinks it cancer pain ,so not sure about it . I'll make a decision next week
Hope you get on well with your treatment, sending love .
Dear Cheryl. I am so sorry that the news was bad. I have no idea about the Gemsar but I’m sure you, your husband, family and friends will work out the best course of action. You must try to stay fighting though. Your mind is powerful too. Wishing you so much love and strength. This f@@king disease is so cruel. I will be praying for you.
Hi JustKBO , I'm very emotional, still getting a lot of pain,now got Tramadol to try . Had a phone call from the Macmillan transition co- ordinator this morning , very helpful ,the specialist nurse is going to phone me tomorrow , said ally needs will be met by them ,wont even have to struggle with GP surgery for pain medication ,they will deal with it all for me , Also going to refer me to St. Barnabas Hospice , I feel at last im getting the help I need, will talk to the nurse about chemo and second opinion tomorrow, but im starting to feel like I want some peace in my life now .xx
Im sorry to read about your appointment. Its all rubbish. I am on carbo / gem but only have day 1 of cycle, not day 8. My oncologist said for me day 8 would not change outcome and I would struggle with bloods. Im ok, do get tired first week and have magnesium suppliments but so far doable.
I am so sorry to hear that your appointment left you feeling this way, and that you and your husband are experiencing a mix of emotions.
I can see that many members of the forum have sent some replies to your post, I hope these have brought you some useful advice and provided some support at this time.
We are here to support you and your husband, so please do get in touch if you would like to talk things through. If you would like to contact us please call Ovacome via our support line on 0800 008 7054 or email us on support@ovacome.org.uk. We are open Monday- Friday 10am to 5pm.
We do have a Friends and Family group that may be of some interest to your husband. This space has been set up for people to meet and share experiences. He is also more than welcome to contact us through the number and email listed above. Our next Family and Friends group is on Tuesday 27th September 2022 at 5pm, and are run monthly. For more information about the group and how to sign up please follow this link ovacome.org.uk/Event/family... .
Thank you for your reply , the replies have been very helpful , I will tell my husband about the family and friends group , I think it would be helpful to him ,but hesy never been goid at sharing his feelings , I'll try and persuade him .
Sorry I don’t have any wisdom or advice to share, but it sounds like quite a few ladies had some great ideas. I am sending positive vibes and well wishes to you and your family.
I’m so sorry to read your post and the rubbish news. I, too, am awaiting test results and my husband and I are struggling with this. It’s a cruel disease and all of us really feel for you. Stay strong Cheryl, we are all thinking of you and praying x x
Hi Cheryl, I am so sorry you have been given this news & I understand you must be exhausted fighting this dreadful disease five times but if you decide to fight again I can tell you that carboplatin & Gemcitabine (Gemzar) is definitely tolerable. I had been on this combo starting in march 2021. In the beginning I got both on week 1 & two weeks later Gemcitabine only but it lowered my white blood cells & I had to have Neulasta injections so I missed my next chemo. The white blood cells were still too low when I was due my next chemo so my oncologist decided to give me the carbo/Gem together every 3 weeks instead & not have the gemzar on the second week. ( sorry if I am not explaining this very well). This worked out much better & I didnt miss anymore chemo infusions. After a year on carbo/gemzar only, my oncologist has me on the Gemzar on its own as a maintenance & all my remaining nodes after my last op have continued to decrease in size & there is no new cancer . After the intitial hiccup in the beginning with the bloods the only symptoms I have is heartburn & some fatigue for a day or two but after that I am flying around doing everything that I used to do before this recurrence. I will be on it for another few months & then it might be a wait & watch situation. Cheryl I hope this might help you come to a decision whether you want to fight on again. I know we all react to chemo's differently but it might be worth you trying this combo to see how you get on with it & if its too hard or not working for you then you could stop. I wish you all the best no matter what you decide. Dont hesitate to pm me If you any questions you want to ask me. I will be thinking about you & your hubby & hoping you find the strength to carry on. Hugs Xx
Thank you so much ,that has made me feel so much better, the chemo nurse phoned me today to arrange my first infusion , I got off the phone and sobbed for ages saying I couldn't do it again , your reply has made me feel I can at least do the first cycle and see how I feel .I hope your treatment continues to go well .
I’m so sorry to hear this Cheryl, I know how it feels to be between a rock and a hard place .i can’t add anything to what has already been said .
Prof is my oncologist, he is such a lovely kind man , could you arrange a telephone consultation with him ? I totally understand that you don’t want to travel.
Thank you,my head is spinning at the moment, not sure what to do ,one minute I want a second opinion ,next I can't face it all ,hope my head is clearer next week .xx
so sorry to hear this. I would definitely get a second opinion. it doesn't hurt and may open up opportunities. try a cancer specialty facility if one is available.
I am currently on carboplatin and Gemzar. I have had one set of treatments so far and have not had a lot of side effects. I had carboplatin and taxol two years ago and had no side effects other than hair loss and fatigue. also note my cancer is still in the early stages.
so far with the carbo and gemzar I've had the fatigue and some hair loss. the one unexpected side effect is abdominal cramps. very bad ones but I was told to take pepcid or the compazine I had been prescribed and that helped.
hope this helps. My prayers are with you and your family. stay strong!!
Thank you for replying, with each chemo I've had very bad side effects so im really scared about this next one , I don't feel at all well so may not cope with it , im seriously thinking about a second opinion .x
Hi Cheryl so sorry to hear you’ve had this latest awful prognosis. Really feel for you. Atm you are in shock and disbelief but I’m sure in a few days you will start to feel accepting and start getting your head round it and your fighting spirit will return. Think back to when you were first diagnosed and all that you have faced and been through since, would you ever have thought prior to it that you could get yourself through all that?!
So hang in there and when you feel a bit stronger definitely get a second opinion with a cancer specialist and see if there’s someone out there who can help you. It’s worth trying.
Sending love and hugs and very best wishes that you can get through this
Thank you Claire,what you say makes perfect sense, I feel a bit stronger today , I decided to leave decisions until after the weekend, hopefully then I'll be in a better place. Wishing you well .
Hi - so sorry to hear this news. I have nothing to add to what everyone else has said, but to wish you all the very best. This is a weird disease and who knows how the new treatment they are offering you will effect the cancer. Will be thinking of you - you have always been so supportive to others who have needed it. I hope you are feeling a bit more positive now the awful shock has had time to wear off a little. Best to you and your family. x
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