My Husband detected with ALL

Hi All,

recently my husband detected with ALL pheldelphia negative. He is 40and getting into 41 this Wednesday. His pulse rate goes to 125 is it normal. Also he don’t like to eat. His chemo started and finished 3 sessions and 4th planned for 21st May. 0.05 % was detected in BMT. What will be next steps? Will he have to go through Second cycle as well or by any chance of all well goes to maintenance phase? 

also I am looking fir blue badge for parking as its very difficult him to walk from parking. We live in swindon and treatment is in Oxford. 

TIA

  • Hi

    Welcome to the ALL forum but of course I am sorry that your husband's ALL is the reason that you are here. Treatment of your husbands ALL will depend on the treatment protocol that he is following and your husband's team will be able to advise you on this. I always found that the clinical nurse specialist is a good source of information.

    I was 43 when I was diagnosed with T Cell  ALL (also Philadelphia negative) and I was treated using the UKALL 14 protocol (this was a trial when I was on it in 2012-13.) I ended up having 3 rounds of chemo followed by a stem cell transplant. I have made a good recovery and life is very much back to normal for me. You can read my journey by clicking the following link: Paul1969 PROFILE

    With regards to obtaining a blue badge in Swindon you can use the following link to get more information to apply:https://www.swindon.gov.uk/bluebadge

    If you have any questions please fell free to come back to me. 

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Thanks Paul! He moved to ICU today due to low BP and pancreas inflammation. Wishing everything to be normal soon. 

  • Hi

    Ouch that's painful. I reacted to one of the chemos and ended up with pancreatitis and remember my blood pressure dropping. I think I avoided ICU that time by the skin of my teeth but it did set back my program some what but got there in the end. 

    He is in the best place where they can monitor him closely and give him the pain relief he will need and make sure he gets the the fluids and nutrition IV.

    Hopefully it will settle down for him.

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Thanks Paul! Definitely your words are big support for me in this hard times.

  • Sometimes it is harder being the person supporting rather than the patient. I am sure you are doing a great job. 

    Make sure you take care of yourself as well.

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Hi

    I was wondering how things are and how your husband is doing?

    Hope you are keeping OK.

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Thanks Paul for Checking on well-being. He got detected with jaundice. He body is full swollen but he is back to ward now and his white blood cells started generating back.

    regards,

    sudha

  • Hi Sudha

    Good news that he is back on the ward. I also remember swelling up when I had pancreatitis and then turning bight yellow. Even the whites of my eyes were yellow. It took a while for the liver counts and bilirubin levels to get back to normal. I had it badly so I hope your husband had a milder case of it. 

    The journey with ALL is never a straightforward one. It was once described to me that the ideal treatment would be like a plane going straight down the middle of a runway and then taking off. However, most people's treatment ends up like a plane lurching from one side of the runway to another.. but they take off in the end!

    I hope the recovery keeps going well.

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Thanks Paul for all the lovely words. These make me feel strong.

     Thanks,

    sri