I know it is not the correct forum for my sons problem but I have had a number inquire where I have been?
My Son has had his first Chemo and is now at home with his wife. he has lost 1.5 stone so far. He is Nutropenic at the moment which means that he has no resistance to any virus or bug that might want to attack him. He has to be very careful were he goes and what he eats. He has to take his temperature a few times a day and if it hits 38c or he feels unwell he has to go straight to A&E and has now got a Red Card that he has to show to any Doctors or medical staff so they are aware he has to been seen straight away and kept away from infections. He ended up in A&E but found the Thermometer was faulty! Got that sorted but now it is a case of taking him to a specialist center every day. His wife is back at work so I am the taxi 45 mile round trip every day for a visit that can be 20 mins to 4 hours depending on what they do on the day.
We are all now waiting for the next bone marrow test which he is not looking forward to, but they will be best placed to see what next course of Chemo he will need. Will let you know when as we know more.
Be Well
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Offcut
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Hi offcut, thinking of ur son and whole family, I too am having the same health issues with my 16 yr old daughter, so hope all goes well. Take care one and all xx Sonia xx
Thanks sassy, cried when I wrote this reply, then read tams jokes and they made me chuckle, talk about up and down lol ..... hope u and Pete are well ❤️ xx Sonia xx
Hi Offcut, thank you so much for letting us know how things are going for your son. I have been thinking about him and you so good to see the update.
I truly hope that your dear son is getting the very best treatment and will soon be his normal self again. Lots of very good wishes to you, your son and family. xxxx
I hope with all my heart your son fully recovers. I know the treatment and travelling is gruelling, having had 2 cousins suffer it. Both have come through brilliantly.
Look after yourself too, it must be very tiring for you because you will be running in full adrenaline mode, (As we do when family need us) and you will only feel the effects of all this stress when things calm down. So, do rest whenever you can.
I am pleased you posted offcut, as I have been wondering how your son and you and your family were doing. Its difficult times for you all just now, so I hope that treatment goes well and he starts to improve. Look after yourself too, and sending you extra warm, snuggly hugs.
Thank you so much offcut for taking the time out to let us know how your Son is getting on. I am hoping the treatment works well and your Son and family will get back on an even keel.
Try to get as much rest in between the driving as you can. Its a nightmare for your son trying to keep germ free, wishing you all the very best outcome. Love Iris x
Thank you Offcut for posting this update here. Personally I believe that it is relevant to the Community. It affects you personally and as a member of our Community and is therefore by association something that affects us.
I continue to think of you, your son and your family though this particularly difficult time even more than usual.
He is your son whether he is 5 25 or 45 he needs you , and you like any good ,caring dad will do for him and his family whatever is needed. I wish you all well and hope you receive some good news soon.
Hi Offcut of course this is the right forum for talking about your poor son! I hope he starts recovering a bit very soon. Don't you go tiring yourself out too much now. Sending lots of healing vibes and hugs your way. x
Don't want to be negative but in 1997 I was diagnosed with AML aged 42 . I was told I had six months without chemo and if that didn't work I would need a bone marrow transplant.
I was given three different courses of chemo over a period of nine months to get me into remission. The first was extremely high dose and I was in hospital for six weeks most of that was in isolation especially during the no resistance phase. ( Also lost 20kgs as couldn't eat solids) IF you need I can advise you or your son privately (as I know men can be funny about being given guidance) all the other ways I fought to survive.
I dont know what his Doctors have told him but it is quite a long fight. Must admit I was shocked to hear that he is at home during the no white cells phase but maybe the treatment has improved nowadays.
However he must take extreme care not to pick up any type of infection.!
I am horrified that he is expected to travel by taxi and go to A & E , both of which are full of ever day infections and which are also on the clothes his wife or any visitor wear. Does he at least wear a face mask when in contact with outsiders?
I don't want to scare you but it was the infections that got the other patients when I was being treated, not the chemo!.
So PLEASE ask him to take great care and not do the male bravo bit!
PS His temperature can also go down so watch out also for low grade fevers!
I hope his next bone marrow test is clear.
Best wishes to him and everyone in the family who is dealing with this.
Margaret.
PPS I am on this forum as I ended up with a blocked Superior vena cava from the installed catheter for the chemo and which is now causing breathing / lung problems but I have seen my children grow up.
It is Dads Taxi not public he has been told to steer clear of that. They have said it could be 5 months or 5 years that he has the central line in for treatment. But it will all depend on his next bone marrow test as you say to see how well it has all gone. He had a nasty rash all over his body for about a week while he was in his single room.
Yes keeping positive is the only way to go and not to panic.
The rash was the bodys' reaction to the chemo. He might also get bad doses of thrush as the chemo also kills good stuff in the body. Unfortunately there are a lot of down as well as up hours - like riding a roller coaster.
Chemo is accumulative, the first dose isn't as bad as you thought it would be however the second is ten times worse. You can have moments when you think you are dying and want to get off the roller coaster and die- that's the bottom!. Then you have the long slow climb back up to the top
He should drink lots of fluids preferably filtered water to keep flushing the chemo out and protect the kidneys. Also try and eat, to keep his strength up. Not big meals but light snacks whenever he can of what ever he can keep down. Live yoghurts with fresh fruit/ Breakfast cereals, basically anything at any time of the day. Don't try and keep to any type of meal system as everything will taste awful and metallic. I found chewing jelly gums helped me however one minute you can fancy something and the next cant face it so you need to have some food ready on hand. You also become very sensitive to light and smells as well as becoming totally exhausted.
Watch out for the central line as it was the one called a Hickman line that caused my SVC blockage (and now it is known that it can do this)- if he starts coughing severely and his face swelling have them check out his SVC.
Thanks Susy6 . I know sometime it is not pleasant to warn about the side effects of chemo but I find knowing what might be happening keeps Mr Panic away.
Just not getting anywhere with my tests at the moment ( other than the option of an open heart bypass) Still trying to find alternative solution or something that will help current breathing / low sats problem.
Good luck offcut with your son. If you have to go to A & E or your Doctors always advise them he is on chemo, show them your appointment card and they should isolate you to avoid infection.
Wishing your son well, having been through chemo myself I know how awful it can make you feel, and the care that has to be taken during your neutropenic days.
Just catching up on e-mails etc after holiday and just seen this post. So sorry your son going through such a bad time - life can be so cruel. Hope things get better for him soon, and you take care of yourself too. Pauline x
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update again
Update on my wife. 
Another question regarding my dad
New Member - Dad COPD Complete Denial
my son seems to be getting worse with his heart rate dropping to low 50,s or even lower most of the night
