I had my outpatients appointment with new oncologist last week prior to chemo no. 5 for first recurrence. Neutrophils were only 0.7 therefore no chemo unless an increase seen on the day of chemo which was scheduled for last Thursday, two days later. I didn't want chemo to be delayed as I'd booked time off work, have family to consider plus I was psychologically prepared for it. I asked if I could have Filgrastin injections to boost my neutrophils as I knew of others who had received it in similar circumstances, one of whom was a haematology oncology patient. Consultant still said no to my request. When I asked why other patients could receive Filgrastin to boost their bloods she said in haematology patients they were looking for a cure therefore regular chemo necessary whereas I am palliative so a delay in chemo wasn't as important. Also if bloods remained low then she would reduce the chemo dose instead. I was a bit shocked by this as I'm 52 with a young family and a desperate desire to survive as long as I can. I came away feeling very low and despondent but do others think they would have felt the same? I want my disease and me as a person to be treated individually and every possible way to keep my cancer at bay to be considered.
After all that though I went home, ate a huge steak that evening and liver the next day and neutrophils bounced back to 1.2! Chemo went ahead thankfully! x
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sticky3006
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Wow. That’s rough. I’m glad you got your chemo. I’m on first recurrence (just had #5) and getting a bit of the same vibe. They’re fine for the cancer not to go into remission as long as it’s stable. I was upset about that but then they said it’s like a chronic disease. On the other hand I don’t relish being on constant treatment forever.
No, me neither! Thanks for your reply delia2. Its difficult when this disease is all consuming for us and we examine every detail, conversation and treatment plan. Onwards and upwards! Take care x
I am not surprised that you feel low after that response. I do think that we have to try to develop a thick skin around health professionals who just fire off lines like that without thinking. As you are working, you are still economically productive- the health service is supposed to support people with long term conditions to stay working, you could remind her of that. Filgrastin is expensive but so is having you constantly delayed and having to be away from work.
Why not check with the Ovacome helpline if there are national guidelines of the use of Filgrastin or if your hospital is just being stingy? xx
Thats a good point Lyndy and thanks for that. Obviously being in our situation we focus and hang on every word said to us and I suppose doctors may become a bit immune to their response and way of speaking to people. I'm just pretty sure that if I were the doctor I'd be looking at every angle to ensure an individual got the best, most effective treatment plan. Thanks for your help x
Thanks Linda. I did speak to my CNS as she was at the appt. She said not to take the word 'palliative' too seriously as we were looking at a chronic disease but when that's said to you it does floor you a bit! On we battle but I suppose! Take care, sticky3006
Hi there Sticky. I would have been gutted by that response by your new oncologist too. It sounds like some training in bedside manner is called for here. I am on 5th line treatment with gem/carbo and am having filgrastim injections for 3 days after my chemo sessions. I am also termed as palliative but they want me to be able to complete this treatment. I understand that filgrastim can give side effects but you should have been given the option.
I'm delighted that the steak and liver did the trick. Well done
Sian xxxx
I can totally understand how that meeting left you feeling low! When my scan showed I was in first recurrence, the registrar I saw said " the trouble is you are " refractory" and very difficult to treat" I was shocked and numb, but my husband said "well if its not too much trouble we would like you to try" Go him indoors! I realised that I really must try to not let these off the cuff remarks get to us, but it really felt that day that she was writing me off. Good luck with your continued treatment and fight for what you want if that is what it takes, speak to PALS if you don't get any satisfaction. x
Great response from your husband! Yes I think if this happens again I’ll have to say something just to make her realise that there’s a way of speaking to vulnerable people. Take care x
Rather harsh words to hear I think. I had Filgrastin injections but only after I'd already had a dose reduction. I was told a dose reduction was preferred to delays.
Glad your neutrophils increased in time. That's good to know steak and liver are also good for neutrophils, I ate them when I had low haemoglobin.
Hello. I just wanted to say that I’m 52 and have two young kids too (11 and 8) and was diagnosed 3c in January 2019. Have just found out I’ve got a recurrence. Gutted it has comeback so quickly. At my last appointment (before I knew scan result) my doctor said ‘oh 3C so it will come back’. I half admired her directness and half was shocked by that - had been hoping it wasn’t inevitable. I suppose it’s hard for them to guage how direct to be. Anyway I identify strongly with your situation. I haven’t told the kids yet it’s come back. How did that go for you? Jane x
It's funny how casual they are sometimes with their approach. Perhaps they've never experienced a cancer diagnosis with a close friend or family member and if they had they might say things slightly differently! x
AFTER READING YOUR POST I'M JUST FURIOUS. CHANGE YOUR DOCTOR!!! AT THE END OF THE DAY THEY GO HOME AND HAVE NO THOUGHT OF THE STATE THEY'RE LEAVING THEIR PATIENTS. YOU NEED A DOCTOR WHO WILL PROVIDE GOOD SUPPORTIVE CARE. I HAD A DOCTOR WHO WAITED UNTIL NEUTRO AT EXACTLY 1.5 BEFORE FILGRASTIM AND PLATELETS SO LOW I HAD TO BE HOSPITALIZED FOR THREE DAYS WHEN SHE COULD HAVE GIVEN ME PLATELETS AND KEPT ME OUT OF THE HOSPITAL. ALSO WOULDN'T GIVE ME BLOOD UNTIL HEMOGLOBIN DOWN TO 8. I CAN'T BREATH WELL WHEN IT GOES BELOW 10. THE FACT THAT I PASSED OUT ON THE FLOOR IN HER WAITING ROOM STILL DIDN'T EFFECT HER OPINION THAT BLOOD WASN'T MEDICALLY NECESSARY. I WAS TAKEN BY AMBULANCE TO THE EMERGENCY ROOM AND BLOOD WAS GIVEN TO ME RIGHT AWAY. SOME DOCTORS SHOULD BE WORKING IN A STOCK ROOM SOMEWHERE.
I FOUND A DIFFERENT DOCTOR WHO UNDERSTANDS THEY ARE TREATING AN ENTIRE PERSON. CAN YOU FIND ANOTHER DOCTOR?
I know what you mean. I had my last #6 chemo treatment on Thurs Feb 20. I usually have blood test on Mon & meet with doctor on Tues. But last 3 times my counts were low, so I had another test on Wed (day before chemo) which was good results. This week I had blood test on Wed so I wouldn not have 2 tests 2 days apart. I asked about the Filastin but doctor kindly explained that in my treatment (1st recurrence) , it is Ok to move the chemo day further. Doctors use the Filgrastin for patients whose treatment must be regular & on time & no delays, like my friend's chemo for pancreatic cancer. She has to have chemo every 2 weeks or the treatments don't work to kill the cancer. painful. I assumed that it was the cost. By the way I'm in Canada, and we do have those kind of doctors here as well. Like you I had big protein meals prior to blood test to boost blood counts..
My Dr after chemo always gave me immune booster shots, also I had blood transfusion during chemo too but I had 18 rounds of chemo in 14 weeks with intraperitenil chemo too. I believe you have to have faith in your Dr. Your life is in her hands. It sounds like your steak helped. But adjusting chemo meds is what they do. I told my Dr I wanted her to do what she would do for herself if she was in my shoes. I've been cancer free 6 yrs. Best wishes for great results, Liz
I'm really pleased for you Lizchips. Thats great news. I suppose I want a doctor who, as you say would do for me as he/she would do for themselves. I think because I'm very empathetic and understanding I want that from my doctor too. I suppose I have to trust her judgement and experience but it's also good to be your own advocate and to question a decision. Take care x
Hi sorry u had such a rubbish appt. Do what I did. .. ask to change yr consultant. You owe it to yrself to have a good relationship with yr dr. Mine is brilliant, she gives me a hug wen she sees me, chats about everyday things and tells me she will do everything for me. I wish you well xx
Thanks Katmal. I think when it’s something so significant we need to feel 100% happy and not leave an appt. feeling frustrated and not heard. I’m glad you managed to change consultant. I’ll see how things pan out over the next few weeks and if unhappy then I’ll ask to change. Hope all is good with you x
I agree with the suggestion that you should change your consultant. Good luck - consultants can and often are wrong - there are no statistics for individuals xxx
Okay I am coming from a slightly different view. Yes your doctor has made you feel like you are hardly worth treating and that’s unforgivable. But I also think that delaying a chemo treatment, although frustrating, might actually be more beneficial to your body in that situation than giving you another drug to bump your numbers up. It might be easier for you to tolerate treatment if your body is given time to readjust and recover before the next zap of chemo. After all, there’s no definitive right or wrong about timing or dosage of chemo, only what has been trialled and recorded. Hope you have plain sailing from now on x
Yes I see what you mean. I suppose in the general scheme of things my ca125 was heading down so she thought best to let me recover without additional drugs bring thrown into the mix. I think at the time I was just shocked at the way the dr. said I was palliative as though they meant we’d just sit back and see what happened. Anyway thankfully chemo went ahead which I’m assuming was down to my liver and onions!
I know exactly what you mean. Before I started my second line chemo my oncologist had me sign a form to say I understood my treatment now is purely palliative. It was a huge shock to me to see that word in black and white.
To be honest it has made me tougher and stroppier and I don’t feel any more that I should agree with every decision the oncologist makes. I wanted to stop carbo caelyx after 4 goes and I was told it had to be 6. I asked, why, is it going to make me well if I have 6? So we compromised on 5 😊. Same thing with me not wanting to take a parp inhibitor.
Palliative is just a word in the end, it doesn’t change what will happen to us. All the best x
My Oncologist said recently when I recurred “you will hear the word ‘palliative’ bandied about but it’s totally the wrong word because I hope to treat your cancer as a chronic disease”.
They therefore need to change that word and only use it when everything that can be done had been exhaustively used. X
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