[Joanna]

Declining health before treatment starts

by Joanna on Thu Mar 24, 2011 2:51 pm

Hi everyone.

My father has just been diagnosed with myeloma, though we don't know what stage it's at yet and have not heard anything about what treatment he might have or when it will start.

This concerns me because it seems that even in the last week or so his health looks to have declined. His appetite has been off for a while but a couple of weeks ago he was able to have a 'normal' kind of dinner most days, then last week he was alternating regular dinners with something simple like soup. But the past few days he's hardly been able to eat anything and today has just had water, a few sips of fruit squash, and two cups of tea that he could only drink half of.

I don't know what to do. I feel like if this continues much longer he should be in the hospital where they could maybe give him an IV or something to keep his nutrient levels up. He's already lost a LOT of weight, about 2 stone [28 pounds / 13 kg], and it seems to be mostly muscle that's gone because there's no muscle tone in his arms at all. He has also been feeling dizzy lately when he stands up (though he doesn't stand up very much anyway because he has no energy), and is very weak. And today he's feeling nauseous.

How bad does it have to get before I should call for help?

Did you/your family member's health get worse in between diagnosis and treatment? Were the doctors able to do anything about it?

Any advice?

Joanna x

[Marnie]

Re: Declining health before treatment starts

by Marnie on Thu Mar 24, 2011 5:32 pm

Sorry to hear about your Dad. My Mum was diagnosed two weeks ago after being admitted to hospital as an emergency. It started in November when she started to complain of pain in her hips and when walking, within a few days/weeks she needed a stick to help her (normally such an active lady), after x-rays our GP said she would need a hip replacement then after being referred to a consultant he said no it wasn't a hip replacement she needed and at this time she seemed to be feeling much better and my Mum said there was not much need for a CT scan. She had a follow up appointment with Consultant in 8 weeks. During this time she started vomiting (so we thought a bug as she had same thing over new year), but the sickness didn't go for over a week dispite the GP coming out daily to give antisickness injections .... our GP finally referred her to hospital after one week of not eating or being able to hold down meds etc. 3 days later she was diagnosed, the vomiting was due to the high calcuim levels in her blood which the hospital were able to stabilise. She started her CDT treatment 5 days later.

The calcuim is present as the bones are damaged so I would seek medical attention before it gets worst.

Hope this helps.

[Joanna]

Re: Declining health before treatment starts

by Joanna on Thu Mar 24, 2011 6:50 pm

Thanks Marnie. Did you have to call an ambulance for your Mum to be admitted as an emergency?

My Dad does have high calcium levels, he had to go into the hospital urgently on Monday to have an IV with something to lower his calcium and I think next week has to go back to see if it worked. But his next consultation to discuss the biopsy results isn't until the beginning of April. Is there anything they can do if he gets worse between now and then?

[idadome]

Re: Declining health before treatment starts

by idadome on Thu Mar 24, 2011 8:03 pm

Please watch your Dad closely. High calcium levels are very dangerous. They can be lowered by "flushing" the system with IVs and he should start feeling better. Myeloma can also cause kidney damage and this can also make one feel bad. I started having problems in April, 2006, and it was July before I got so sick that they put me in the hospital and finally determined what was wrong. One interesting note is that I lost my taste for chocolate during this time -- quite a big deal for a confirmed chocoholic.

These side effects can be treated without actually treating the myeloma but hopefully they will get him started on treatment soon.

Janet

[Kansas]

Re: Declining health before treatment starts

by Kansas on Thu Mar 24, 2011 9:29 pm

Marnie, be sure to tell docs about being dizzy . Rex had this problem - due to drop in blood pressure = especially if not consuming enough fluids (water) - his kidneys have been affected so have to be careful with fluid intake all the time. Our best to you both - you may find that you have to be very aggressive/firm/blunt with the medical folks on how he is actually feeling.

[Kerbanis]

Re: Declining health before treatment starts

by Kerbanis on Fri Mar 25, 2011 10:18 am

Prior to my diagnosis with multiple myeloma, I had lost 40 pounds. My appetite had disappeared and I had been queesy. Very few things even appealed to me at that time. I was incredibly weak and light headed and confused. For months, I had been having bone pains in several locations. As a school teacher, this was a difficult time. Once the diagnosis was established and we began chemotherapy and medicines to stabilize my bones, I began to improve and regain my appettite. The excess calcium in my blood stream was largely responsible for my having no appettite. Two weeks after the first infusion for the osteoporosis medicine, I suddenly asked to be taken to a particular restaurant, where my husband thought he would get to finish my meal after I picked at it. He was rather disappointed when I ate every single bite of a very large meal. As I was able to eat again, my health saw some improvements, simply because I was taking in more nutrition.

[alyssa]

Re: Declining health before treatment starts

by alyssa on Fri Mar 25, 2011 1:03 pm

Hi I also lost my apetite and could not eat before my diagnosis (among many other symptoms). I started fainting, went to the ER, was sent home to wait for a referral a week later for AIG clinic for hard to diagnose or complicated health conditions. Went to the appointment, could barely walk from the waiting room to the exam room had to lay down on the exam table because I was feeling so faint and sick. I was admitted to the hospital from the clinic, for bone marrow biopsy to confirm diagnosis of multiple myeloma, and because I was so sickly with the fainting spells, and unable to eat. (ER had ordered the SPEP test that is used to monitor M proteins in Myeloma and the results were a very high M- spike). I had very low hemoglobin, very high protein, high calcium, stuff that really screamed Myeloma. Started high dose steroids the same day, and chemo a few days later once the bone marrow came back. They did a lot of tests in hospital and discharged me a week later at my request (I just couldn't take being in hospital anymore) when I went home I still could not eat, and coudl barely move off the couch. Not a good time for me!

[Marnie]

Re: Declining health before treatment starts

by Marnie on Sat Mar 26, 2011 4:48 pm

Hi Joanne,

Hope you and your Dad are doing okay. Our GP arranged for an ambulance for my mum. The hospital were able to sort out the calcuim levels (not sure how but she did have lots of different drips), they started her on steroids and her CDT chemo regime a few days after diagnosing multiple myeloma.

If you have any emergencies inbetween appointments that can't be resolved over the phone with his consultant then yes do phone an ambulance and go via A&E, I wish we had been more pro-active with my Mum when she was vomiting for over a week!!

Has your Dad started his treatment?

[Marnie]

Re: Declining health before treatment starts

by Marnie on Sat Mar 26, 2011 4:49 pm

apologies - meant to say Joanna

[Joanna]

Re: Declining health before treatment starts

by Joanna on Sun Mar 27, 2011 8:24 pm

Thanks everyone for your input and your kind words. My dad got some anti-nausea medicine from his doctor and has since been able to eat a little more, though he's still very weak.

It's frustrating that all the accounts I've heard so far seem to describe treatment starting pretty soon after diagnosis. His next appointment with the consultant is booked for the first week of April, which will be two weeks after he had the biopsy, and even that was almost a week after they said he had myeloma. Why is it taking so long??!!