Hi Rosemary
Good luck for Wednesday's appt at the NAC. Let us know how you get on.
Take care
Eva
Good luck Rosemary at the NAC. I'm sure all will go well.
Cheers
Gary.
Hi Eva
Thanks for the good wishes - it all went very well. The NAC is a very busy and interesting place. It is good to talk to people who understand the disease, as my local hospital and GP do not seem to have much experience of amyloidosis. Fortunately the amyloid is only in the kidneys. I will be having 6 cycles of chemo but probably not starting until after Christmas. How are things with you?
Take care
Rosemary
Hi Rosemary
That sounds very positive. I now have an appointment to go in December. Bit nervous at what they might find. My swollen legs have been painful this week too. How do the cycles work? And do you know what side effects to expect? I'm glad it went OK for you. You're right about GPs. It's a learning curve for everybody.
Take care
Eva
Hi Eva
The doctor advised me that it will probably be 5 week cycles - I don't know about side effects and just hoping that they won't be too bad. Are you taking a diuretic? I know I have felt much better since they were prescribed - I also keep my legs raised as much as possible.
I should have taken somebody with me to the NAC as its hard to remember everything in that situation. I just felt relieved that it was only in my kidneys.
My worst problem is feeling tired - little energy to do anything!
Take care
Rosemary
Hi Gary
Just wondering how you are. Are you coping with the treatment OK? It's encouraging to think it might improve kidney function so keep going. Look forward to an update. I have an appt for the NAC in Dec. Bit nervous but after a year of struggling with symptoms it's a step nearer.
Take care
Eva
Hi Rosemary, how are things? My appt at the NAC is coming up soon. Bit nervous. Just wondering how many of the tests you had as the letter lists quite a lot. I've had that many tests over this last year. You just get used to them in a way.
Hope you and Gary are well.
Best wishes
Eva.
Hi Eva
Firstly shortly after I arrived at the NAC I had an echocardiogram which took around 20 minutes. Then back to the waitingrom for 10 minutes . Next I had an ECG, bp and weight check. Then a 6 minute walk test. Shortly after this I had blood tests and the injection of radiation. Then there was a break for a few hours. I stayed in the waiting room but you can go out for a walk etc. About 1:00 I had the SAP scan which took around 25 minutes. Back to the waiting room (there is a coffee machine), then the consultation with the doctor. Took about 20 minutes. Then another consultation with a nurse who I can contact if I have any problems or worries. They do explain everything. I left the hospital about 3.15 so I was there around 6 hours. Try not to worry too much. I am just thinking that I will probably have a lot more energy this time next year. I will be going back to the NAC after the second cycle of chemo. I go to the haemotologist on the 18th so might be told when I am starting the chemo. I will be on cyclophosphamide/Velcade/dexamethasone.
I do hope everything goes well for you. Don't forget to let me know how you get on.
I'll be thinking about you
Good luck
Rosemary
Thank you Rosemary. That is very helpful. I've been asked to go for a 2 day appointment though. I think the SAP is on the second day. When I confirmed my appt they mentioned the DPD scan so don't know if I'm having that as well. I'll let you know how I get on.
Best wishes
Eva
Hi Rosemary
My appt routine was the same as yours. My kidneys and heart (a bit) have been affected and the treatment is the same as you have been prescribed.Is Velcade the new wonder drug? Trying to stay positive.
When do you start treatment?
Eva
Hi Eva
I had an appointment with haematology yesterday but when I got there they said it had been cancelled. They are fitting me in on Christmas Eve so I should know more then. I just want to get on with the treatment now. I think they have had very good results with Velcade. I'll be in touch when I get a treatment start date. The letter I received from the NAC advised bi-weekly treatment so at least it will be finished sooner than I expected. Just depends on how I re-act to the treatment.Have you got an appointment with your local hospital?
Have a happy Christmas.
Best Wishes
Rosemary
Hi Rosemary, hope the appt goes ok. I have no appt yet, they said they're waiting on the NAC letter. Like you I want to get on with treatment. Fed up of tests,tests and more tests. Some days it's hard to imagine ever feeling better again but we must stay positive I suppose. Lets hope we all have a decent Christmas and look forward to 2015 when we hopefully start to feel better.
Take care and best wishes
Eva
Hi Eva
It takes a few weeks for the letter to come through and you should get a copy. I had to cancel the appointment as I have the flu and had a high temperature yesterday, feeling a little better today though and waiting for the family to come around. I expect we will start the treatment around the same time so can compare notes.
Have a good time
Best wishes
Rosemary
Hi Eva
I had an appointment on the 31st December and they now think I might have myeloma too so I had a full skeletal survey (10 xrays). They found plasma cells in the bone marrow biopsy but are unsure if this is caused by the amyloidosis. Still the treatment is the same and I started today. No side effects yet but I haven't taken the cyclophosphamide tablets and will take them later today on an empty stomach. They have given me anti sickness and various other supportive treatment. I came out of the hospital with a big bag of tablets I'll let you know how things go! Have you got an appointment yet?
Best wishes
Rosemary
Hi Rosemary
How are you? My haemotologist had suggested a full skeletal survey at the last appt but it was the same week of my NAC appt and I put it off. It's a lot of x-rays. I haven't had my letter from the NAC yet so no hospital appt either. Maybe I'll hear this week now that they are back after Christmas. Let me know how the treatment goes. Do you go to the hospital twice a week for part of the treatment (injection) and take tablets every day too? Just wondering what the schedule is. Just keep going- we have to get through this and we will!
Take care
Eva
Hi Eva
So far so good, I know it is early days but best to take it one day at a time. No ill effects so far apart from feeling a little dizzy at times. The velcade injection is twice a week so I'll be going again on Thursday. I had a blood test and then went back for the inection two hours later. A massive bag of medication was given to me (one cycle supply). Quite a shock to have to take so many tablets yesterday. 10 dexamethasone (on velcade day and also the following day), 10 cyclophosphamide (once a week). 1 omeprazole (stomach protector), 3 aciclovir (anti-viral) 1 metoclopramide (anti-sickness) 1 Allopurinol (anti-gout). They gave me a colour coded chart which is very useful and at the moment I am ticking off the tablets as I take them. Feeling quite positive at the moment.
I do hope you are feeling well and that you hear from the hospital soon.
I am sure they have a backlog after Christmas. I did check the letter I received but it was undated. I am sure that it came around 2 weeks after the consultation.
Take care
Rosemary
Hi Rosemary
How are you now that you've started the medication? I still haven't had my letter- I assume it's a backlog as the NAC was closed over Christmas and New Year. There doesn't seem to be any urgency about treating patients. I don't know if that reflects the state of the NHS or the nature of the condition that they don't think there's any hurry. My legs get quite sore and tender from the swelling. I just hope the treatment restores us to some sort of normality. Are you doing four weeks on and one week off with the treatment?
No word from Gary lately, I hope that means he is well. Let us know Gary if you're reading this.
Best wishes
Eva
Hi Eva
I am having velcade twice a week so the cycles are 3 weekly which should see me finished at the end of April (here's hoping) The steroids keep me awake a bit and then I felt tired the day I did not have them. Apart from that every thing is fine. The injection is not painful and the rest of the medication is just loads of tablets. Today I spent most of my day at the hospital but there was a mix up in ordering the injection and notes going missing. Is it worth giving your contact at the NAC a call to see if it can be speeded up?
My legs are also very swollen and I am seeing the kidney consultant next week to see if I can increase the diuretics.
I'll be going to the NAC after the second cycle so probably mid-February to see if the chemo is working.
Hopefully you will hear soon - did the consultant say if you would be on 3 or 5 week cycles.
Take care
Rosemary
Hi Rosemary
I was on high dose steroids until they found the amyloid and they made me very jittery until the effect had worn off a bit. I also found myself awake a lot at night. I think they also made the swelling in my legs worse and that can be a side effect. The nurse at the NAC said at the time that the treatment can make your symtoms worse whilst you take it and not to think that the illness was getting worse when that happened. I vary my diuretic dose depending on how I feel. Being at the hospital most of the day is very depressing.It's one long round of tests and appointments and the NAC want a blood test sent off after each cycle too. The consultant didn't tell me what the cycles would be so I'm not sure yet. Your treatment is moving quite quickly. I hope this means you feel better soon. The nurse at the NAC told me at the time that letters would go out before Christmas but he must have been optimistic. Is it a copy of a letter that goes to the hospital?
Take care
Eva