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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia and Myeloproliferative diseases. She'll aim to respond within 2 working days.

Prognosis for my spouse with Acute Lymphoblastic Leukemia

GiJaney
Posted by

Hello I am curious what my spouses prognosis might be after 3 round of chemo, TBI and SCT the mass on his Lung is still present 

The last Lumbar puncture he had in March showed that there was still no CNS involvement or Bone marrow  

He has 5 more Lumbar punctures to recieve and a Pet Scan to measure the amount of disease present  

they were not able to achieve any remission and everything online shows information (if you relapse) my spouse has never reached remission to relapse from  

after the Pet Scan in 2 weeks or so, if there is still disease left what kind treatment will they do?

ive heard so many people In Canada or the UK coming from Canada for treatments  

we just want some of the hard questions answered 

thank you 

Janey

Caroline- Macmillan

Hi Janey,

I am sorry to hear about your husband. He has had a lot of treatment hasn't he? There are a few pearls of hope in your question- his last lumbar puncture showed no sign of CNS or bone marrow disease, which is great. You don't say if the mass in his lung is ALL or another cancer but it seems that the team are on top of the monitoring, which is also great. There are a few drugs out there for refractory or relapsed ALL such as blinatumamab which he may be eligible for. Your team can advise.

Uncertainty about what the future may hold can be very difficult to cope with. And your question is a difficult one about prognosis.

Each person is affected differently by their condition, this can also depend on their age, general health, and treatment. Two people, with the same type and stage of cancer can have a different prognosis. That’s why it is difficult for specialists to say how long a person is likely to live for-they may be able only to offer average figures on how long people in a similar situation usually live forBut you don't want an average, you want to know what will happen to you. Unfortunately, I cant give you that information as no one knows.

However,Your Macmillan or palliative care nurse may be able to help you more if you ask about any specific changes and how significant they may be. If your husband doesn’t have this type of support, your GP can usually arrange this quite easily.

I hope that I have answered your question, if you have any more, just come back to me.

Caroline - Macmillan  Information Nurse Specialist

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.  

GiJaney
Posted by

Thanks for your quick response. 

I’m sorry I wasn’t so clear. James has had 3 Lumbar punctures and 5 more are still scheduled. They could not get the others scheduled and I can only guess because he ended up with a leak and had to have a blood patch, then he got an infection. We were worried they were not keeping up with them because we were afraid of relapse into CNS . His platelets have not recovered yet to date so after they jump up to 50 they will plan the next LP. It’s been over 2 months since they gave him one.

James presented with a large mass and some smaller ones on his Right Lung, some smaller ones in his abdomen and fluid in his R Lung and all of these areas tested positive for ALL  

I guess I’m feeling confused because the disease has not been found so far in his BM or CNS, but after 3 rounds of intensive chemo, with 3 rounds of Intrathecal Chemo  and 1 round of radiation the mass still remains on his lung and has not shrunk even by half  

yes I have researched all the articles because the medical staff here won’t give any straight answers.  

I understand that there are a crazy amount of outcomes and each patient is so unique when it comes to blood cancers but any info from them in the last 5 months would have been helpful.  

we asked what kind of treatments are available if this protocol does not work, such as clinical studies etc.

When he did not achieve CR after Induction we were trying to be proactive and plan ahead for other options because I knew it was not as good that he still had disease present, not because they told us but because of what I have read. 

We were given no answers and told they had no clinical studies and to go look online, so I did and after 5 months I just found this forum.

I know nothing is written in stone but I feel like Oncologists and the rest of the staff could at least say if this is not working we will try this or this. Our options are still plenty or we are running out of options etc ...... just some clarification would be great.

Im hoping to get a bit here so I can keep him in the positive frame of mind he has had so far. 

Thanks again