Thankyou for your recent reply regarding survival rates, doctors have said he has a poor prognosis and is high risk we are going to see a professor next week regarding sct, is this a normal process ?

  • Hi there, 

    I am sorry to hear this. Yes, it can be normal to refer patients on to a haematologist specialising in transplant. This is because not every hospital is a transplant centre and it is a very specific field of haematology.  Take. Notebook with you and write everything down as there will be lot of information given to you. And remember, there is no such thing as a silly question! It's important that you understand everything. If you have any questions come back to either myself or Jane ( transplant nurse on this forum) and we will be glad to help. Good luck!

  • Hi Caroline, my husband has recently been treated with a trial chemo CPX, which he hasn't responded to, they have now taken him out of the trial and started him on a new chemo called flag-ida, does this sometimes happen ?

  • Hi Connerf234,

    I am sorry to hear this. This happens when initial treatment has failed. FLAG IDA is given as an inpatient and can be quite intense. If you click on the wee link, it will give you some information on side effects etc.

    If you have any more questions, please do not hesitate to contact me again

  • It's not unusual then, does RAEB respond better to flag-ida from your previous experience ?

  • Hi Connerf1234,

    Apologies for the delay in answering. No it isn't unusual at all to have to change treatments. FLAG-IDA is quite an intense treatment  and there is no way to anticipate how someone is going to respond.  It depends on age, fitness and other co morbidities as well as kidney and liver function . Add the risk of infection- you have a whole lot of uncertainty.

    That feels like a really downbeat, awful answer but I have had lots of patients respond very well to FLAG IDA and have gone onto finish their treatment and recover.

    I hope this helps.

  • Hi Caroline, Thank you for the response, have you had patients who have also not responded to flag-ida ?

  • Hi Connerf1234,

    Yes, unfortunately I have.  Which leaves very few options. But take it one day at a time otherwise you will go mad with 'what if's'

  • Hi Caroline, what normally happens when this is the case ?

  • What normally happens if this is the case ?

  • Hi there,

    This is difficult to answer without knowing you personally! It really depends on how aggressive the disease is and how fit he is after all the treatment. Some units offer a drug called Azacitidine. This is an outpatient treatment given 7 days per month as an injection. It can take up to 6 cycles before a response to treatment can be seen. It is fairly well tolerated and is given until an individual loses the response to treatment. However, it can mean a lot of time at the hospital unless you have access to a service that will give it at home. Transplant may still be an option long term ( I think I am right in saying this was discussed at the beginning?) if he responds to treatment.

    There are also clinical trials available in various centres for disease that is resistant to treatment- your team should be able to advise on what is open at your hospital. They also can take up a lot of time with tests etc. and may not provide any benefit.

    The other option would be supportive care- transfusions, antibiotics and controlling symptoms. This is worth considering if there have been complications from previous chemo. Sometimes we can do more harm than good and further chemo is not always the answer. However, this approach does mean that the disease is not being treated, just managed.

    As I said before, it is difficult to answer this question without having all the information. I would urge you to not get too ahead and worry about things before they happen. Easier said than done, I know. But worrying about the what ifs and maybes will take your energy away from things that are in your control.

    It is hard to be strong for someone else during all this. Our carers forum is a great place to get tips or support, ask questions or just to vent. Or come back to me or the support line if you have any further questions or need help.

  • He is 3 wks post chemo (flag-ida) and he is so tired all the time, no appetite, loss of weight, I am so worried, does this get better ?

  • yes I am afraid that it can take sometime for patients to recover from FLAG- IDA. Little food and often is the key as he will not feel like eating. The drugs used in FLAG-IDA are very strong and it can take a while for the bone marrow to recover and begin to make blood- hence the transfusions that he may be getting. And when your blood counts are low- you don't feel like eating.

    Just keep taking him in little portions of food that he likes- the more calories, the better.

  • Hi Caroline he hasn't responded to the flag-ida if anything they have said there are more blasts. They are monitoring his bloods at the minute. Stem cell transplant will not be happening now. From experience could you tell me something positive please.

  • Oh I am sorry to hear this. AT this stage they will monitor him and re-group. As I said previously, Azacitidine is an option or there might be some clinical trials available to him.

    First and foremost, he will need building up. As you know FLAG IDA is hard. They will monitor him to see how quickly the disease is moving which will determine treatment options.

    From a 'positive' perspective- and this is from a patient-'' its all in the way you view things. Yes things have been tough and it isn't going your way, so far, but that doesn't mean that it wont turn around. He is fighting and is here. Take the opportunity that is not afforded to many and say what you have to say to each other. ''  I overheard a patient tell a relative of a fellow patient that 10 years ago. They are both still here and in good health.

    Things seem bleak at the minute but he still has options. You may find that he has had enough though. Supportive care ( that we discussed in an earlier post) is an option and although not a curative option, gives many patients quality of life away from the hospital.

    Keep in touch

  • Thanks Caroline, they have made it sound really bad, to be honest I don't think they know themselves, first they said months then 6 months then 12 months or longer, it's so scary, I think sometimes it's best not knowing. From experience have you seen the azacitidine work when intensive chemo hasn't ?

  • Oh definitely ! Its a longer, gentler treatment and can be given until a response is lost. We have a number of patients for whom it has been successful in getting the response to enable us to go to transplant.

  • Is that even when there are blasts present ?

  • Hi there,

    we don't normally do a transplant if there are blasts present as the disease will usually grow back. However, the Azacitidine can clear those. The team will be assessing his progress and options. It might be worth speaking to his CNS as I can only give you general advice whereas  she has access to his notes and information.
    That being said, I am happy to help!

  • Hi Caroline, my husband has the AML 19 treatment then the flag-ida, I am hearing about DA is that a different treatment ?

  • Apologies, 

    I assumed that DA had been discussed and discounted. Yes, it is a regime that has been the standard go to for years. Are they considering that for your husband now?