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6 months of Folfox chemo were a waste of time...

Froggybinou
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Good evening, I am writing here today as I feel very confused and angry and I would like to know if anybody has experienced the same thing as we have and how they coped with it?

Basically, my husband was initially diagnosed with bowel cancer back in January this year. This came as a great shock as completely unexpected. He had surgery to remove a large part of his colon and has since got a colostomy bag in place. The tumor was also touching the uretere and so he had catheters in place for weeks etc.

After the op, the doctors told us that it was Duke C bowel cancer, with 3 lymph nodes affected out of 20. They said they removed the tumour ok and that he would have to go through 12 cycles of Folfox chemo because of the 3 lymph nodes but that it was all very positive. They said the scans were clear in the lungs and liver.

So my husband started the Folfox chemo and went through the whole 12 cyles with not much side effects at all, just some pins and needles in his hands and feet and metallic taste in the mouth but no major issues, no nausea etc. 

So we went for his CT scan quite confident last week and then to see the oncologist yesterday hoping he'd get the all clear. But no, he didn't.... the oncologist said that the chemo had not had any effect and that he now had 4 suspect areas on his liver. 

We were really shocked at this and couldn't really think straight in the doctor's office so we just nodded and tried to take it in. The Dr said that my husband would have to have a pet scan and an MRI and that we'd see him again in 4 weeks' time for the next steps, where he'd tell us if the tumor is operable or not.

Back home, my husband's first reaction was - how did they not see during the last 6 months that the chemo was not working? Why were the 4 areas on the liver not spotted before? What if it's too late now? What if they gave him the wrong type of chemo and they should have given something else/checked earlier that it was working (or in this case not working)? 

We are both so tired, the whole thing has been going on non-stop since January, we thought we were are the end of it, and we now have to start again from the start... We had to cancel our holiday for the second time (it was booked for new years's eve so we could celebrate the end of this horrible year) and we now don't even know if we'll ever go on holiday again... I am trying to keep positive but I just feel we have wasted 6 months letting this thing spread over when it should have been blasted by the chemo. I am just very angry and lost... 

  • Offline in reply to Chrissie05

    My son had two invasive rounds of chemo had terrible side effects oncologist rang this evening too say the chemo hasn't worked and the cancer has now gone into his liver and lung although very small and they are going too try immunotherapy do anyone know if that's any good I am so upset and worried he went through a lot only too find bloody chemo didn't work surely they should have seen that weeks ago I really think these cancer doctors are too slow in diagnosing and treating people quickly

  • Offline in reply to Tiggywinkle

    My son too has bladder cancer ..I really think doctors are taking too long in-between scans and different options why are they dragging their heels  get it done... I feel doctors don't seem too care any more praying is a waste of time just have hope left..he should have been seen September last year but they never sent for him now it's got worse by being left so long initially it's was stones he went in for and was in agony a whole year i really blame the hospital as last year he may have had a good chance and while getting stones out found the cancer earlier 

  • Offline in reply to Celtlady

    Hello Celtlady,

                           l read your post with sadness and a large degree of understanding since l went through similar myself 7 years ago..Reading your post suggests that your son had bowel cancer,surgery to remove the tumour and follow up chemo,but this might not be the case,and was just on chemo which proved unable to have an impact.

                                                          The cancer might be spreading but not detectable at diagnosis and so does not show itself,at initial diagnosis l had an inflamed lymph node by the tumour,and it did not show up in the liver until 6 months later,despite having 6 weeks of chemo/radiotherapy within a month of diagnosis and pre surgery..This is why you are constantly scanned in order to spot if it has arrived,you just cannot see if it is coming,which is the concept that you are struggling with judging by your post.

                     From a clear liver to having 60% removed in seven months and being told a further two week delay would have seen the consultant unable to operate.Liver scan clear at 0 month,clear at month 2,clear at month 4,,growth on both lobes on month 6,should give you some idea of how the spread works.

     In my case l cannot say the doctors were too slow,they were on the case and there are limits to how much radiation you can have from scan overuse.Everything is a balance and the problem is that cancer does not play fair or by the rules.

    l never recieved immunotherapy and my understanding is that it is a treatment not a cure,that said l am aware that for a good many patients it holds their cancers in remission and they can get on with living.Perhaps a good idea for yourself is to telephone one of the specialist nurses on this site who  would have a much greater knowledge of the subject.The telephone number is on this site.

    Heres hoping your sons treatment proves a great success,

                                                                                                   David

  • Offline in reply to gruntifen

    Primary the size of a small childs football, over 30 secondaries in my liver, 3 of them large than 5cm in diameter. 

    Diagnosis, 8 to 13 months.

    after 36 weeks on 5FU, Cetuximab and Oxalyplatin, the primary had gone. The secondaries decreased on average by 50%.

    after 19, yes 19 cycles of oxalyplatin, I was told I couldnt take any more ( remember this is a force muliplier ). If you cannot stand this drug, please last one me cycle.

    after 24 cycles, with one week off due to poor platelets, I was told something unusual was occurring, nothing to worry about, lets see what the next 12 weeks bring.

    after 36 cycles, I was called in. They showed my liver at the start, covered in black balls. Big ones small ones. They showed it as it was from the last scan. They walked through the scan, no marks, no black balls. Chemotherapy 101, you dont get rid of Colon cancer by drugs alone. Well I did. I continued the treatment for 3 years 10 months and 2 weeks, 89 cycles. Reason being, they didnt know what to do with me. My case was published in the Lancet. 

    My comment to you is this, no matter what your going through, no matter how bad you feel, take it. I am a 4.2 million to one shot. I would dearly love to be a 2 in 4.2 million to one shot. 

    I did finally get some surgery, they took out part of my colon because the scarring from the cancer was causing a blockage. It was checked, no cancer. 

    Even now after 4 years of finishing the treatment,  my nerves in my feet and hands still tingle. My skin is not what it was. But I am still breathing and cancer free.

    Do not give up, just because it didnt work for one person, doesnt mean that it wont work for you.

    ps I did have RaaS wild type so I was allowed the Oxaliplatin, you can only have this drug if you a RaaS wild type.

    Also if you have the money, consider SIRT. Look it up. 

    Good luck to you all.

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