Glenda H journey

[Whizbang]

Glenda,

It's good to hear you're starting Vidaza... May it help put you into remission... I was on Dacogen (similar to Vidaza) and it did just that for me...

All the best and God Bless...

[Mseth]

Hi Glenda,

No experience with Vidaza, but many forum members have benefitted from it.
Hope it works well for you. Take care.

[Chirley]

Hi Glenda, are you having the needles or the intravenous Vidaza?

If you have the same course as I had you'll find your counts will drop quite a lot. My neuts dropped to zero and I needed 6 units of blood in the first week alone. I needed transfusions every Vidaza week and again mid cycle. I also developed a fever every third day of Vidaza and had to stay in daycare for intravenous antibiotics which had to be given daily for 7 days....this meant I had to go to daycare on the weekends for the antibiotics and for a day or two after the Vidaza finished. I spent a lot of time in daycare.

I found the nurses at ICON (used to be HOCA) to be extremely nice, I didn't meet one I didn't like or respect.....I don't want to say much about the corporation itself....let's just say, they are profit driven and it's pretty obvious! Once you start treatment you are pretty much under their control.....you have to do as they say if you want treatment. I was shunted from Mater to Wesley to Chermside and back to Mater then Chermside then back to Mater....no choices given....just TOLD that's what is going to happen. I became unable to drive during that time and it was very hard to just go where they demanded. How do you get from half way to the Gold Coast to Chermside if you can't drive and you aren't allowed to use public transport because you have no white cells and not just as a one off but on a daily basis. They couldn't have cared less about the logistics of it.

You're lucky you have the support of the LF. Unfortunately, I didn't find out about their existence until after most of my down days. I found out later on that the nurses in HOCA were supposed to put me in touch and organise a support person but somehow ??? I fell through the cracks.

Good luck....I hope you respond well.

[Glenda H]

I am having the injections. I will have another blood test today with view to having a transfusion . I am getting on okay. I don 't seem to have to wait long for my appointments.

[Glenda H]

Yesterday I had my last lot of Vidasa for this cycle. I also had 2 units of prbc Hb went from 89 to 81 in one day. I didn't have too much trouble this time do hope that continues. Next time I will do the 7 days straight instead of having the weekend off. It will mean 2or 3days less down here in Brisbane.

[sbk007]

Good luck. The first one is the hardest.

[Chirley]

That's great. Glad you get to go back home. How are the injection sites? I had mine IV which, while it was good in that I didn't have painful sites, it took longer to get the treatment.

Don't forget that your counts may drop in a week or two and you should be a bit careful about catching infections. are you having a blood test between Vidaza cycles?

[Glenda H]

Originally Posted by Chirley

That's great. Glad you get to go back home. How are the injection sites? I had mine IV which, while it was good in that I didn't have painful sites, it took longer to get the treatment.

Don't forget that your counts may drop in a week or two and you should be a bit careful about catching infections. are you having a blood test between Vidaza cycles?

I was told to rub in vitamin E cream which I do every morning and night. Nurses also rub in evening primrose oil straight after the injections. Dr F wants me to have weekly blood tests.

[Glenda H]

Well I came back down to Brisbane last Sunday with the idea of starting Vidasa the next day. I had a blood test then waited a long time before anyone came for me. Dr F's receptionist came and said he wanted to see me. He was concerned that all my blood counts were still very low so didn't want to start Vidasa. On Tuesday I had a BMB and a bag of platelets ( which went down to 26 ) and 2 units of PRBC and stayed the night in hospital and had another 2 units of PRBC the next day. I had an appt with Dr F on Thursday afternoon. The BMB report showed (I think) scar tissue in the bone marrow. Blasts weren't too bad. Anyway we decided to wait until Monday when I'll have another blood test and see if I start the Vidasa or come back in a week or two .

[sbk007]

I had to wait an extra week after round 1 because my WBC went from 5 to 2.5, that extra week was a good one because all my counts rose and after round 2 my bloods were normal. Hope that's the case with you.

[bailie]

Just to compare numbers from start of Vidaza until after 3rd round, my WBC went from 2.9 to 1.6, RBC 3.45 to 2.91, PLT 22 to 59 and Neutrophils from 1100 to 400.

I am expecting/hoping that the numbers start turning after 4th round which starts next week. Still looking for an adequate donor for transplant.

[Glenda H]

I started my 2nd cycle of Vidasa on Monday after a week delay. I ended up being quite sick that night and had puffy eyelids ( which I've read can be a side effect). Anyway I saw the Dr yesterday but wasn't too concerned about the eyes(and they have improved). I started taking some extra tablets for nausea and no problems last night. I also had another bag of blood and platelets on Monday .

[god's son]

I wish this site had a spell check, with out I am wasting my time and yours and not getting any story out.
thanks
vic.

[Glenda H]

I came into hospital on Wednesday as needed to have a PRBC & platelet transfusion. I hadn't felt very well that morning as well. 2 days before counts were HB 74 Platelets 18 Neuts 0.01. Anyway I had the platelets then when I was having the 2nd bag of blood I started shaking. Nurse gave me a couple blankets and others also complaining of room being cold. Anyway tea came along. I started to eat some and was promptly sick. The blood was stopped and I was moved to a room on my own (because of low Neuts ). I had blood cultures done that night and then again the next morning because of high temperatures. The 2 nd bag of blood was sent back to be checked out.
Anyway I am now on a 6 hourly Antibiotic IV for a minimum of 5 days. I am also bring nursed as a Neutropenic patient and on a restricted diet. I have had 4 Neupogen injections which is slowly improving the Neuts. Yesterday's blood test they were 0.18. Apart for the time for the antibiotics Dr won't let me home until my temperature has been below 38c for 48 hours. It was up again this morning. I don't know if I"ll have to stay here until Neuts get to at least 1.

[Birgitta-A]

Hi Glenda,
Too bad with the infection! Hope the antibiotics will have effect!

It is really very dangerous for most patients to have neutrophils as low as 0.01. Perhaps you could ask for Neupogen before you get fever?
Kind regards
Birgitta-A
75 yo. MDS Iterm-1 dx 2006. Treated with Neupogen during long periods. After Revlimid treatment since July 2013 WBC 5.6.

[Chirley]

Birgitta I used to go to the same treatment centre company (different hospital) I often had neuts of 0.1 or less and even zero but I was never treated as a neutropenic patient and isolated or offered Neupogen.even when I was admitted with infection and severely neutropenic I was put in a shared room with a lady with a chest infection. It really wasn't appropriate.

Glenda, I hope you feel better soon.

[Glenda H]

Well I was disappointed that the blood test result from yesterday showed the Neuts had gone down instead of up. .18 to .16. It will be interesting to see what today's results are. It seems I'll need more blood and platelets soon. Chirly I am in the Mater hospital at Rockhampton.

[Chirley]

Oh, I see, I assumed you were down here at ICON. Are you seeing Dr F? Is he aware your neuts are low?

It's good you're in hospital in your home town. It sounds like the Mater is treating you right with the isolation, the diet and the Neupogen.

[Birgitta-A]

Hi Chirley,
You know your neutrophils have always worked very well - many MDS patients easily get severe infections when their neutrophils are 0.5 or lower. Infections are the most common death cause in MDS.
Kind regards
Birgitta-A

[Chirley]

Yes, I'm very lucky. I've only had a few infections that were treated very quickly and responded well.

My haem was pretty on the ball, as soon as I had fever over 38 I was given a five day course of intravenous antibiotics whether I kept getting the fevers or if it was only the once.

[Glenda H]

Originally Posted by Chirley

Oh, I see, I assumed you were down here at ICON. Are you seeing Dr F? Is he aware your neuts are low?

It's good you're in hospital in your home town. It sounds like the Mater is treating you right with the isolation, the diet and the Neupogen.

I am getting well looked after here. I mentioned about having Sustagen at home and I get given a jug every day.
Dr F gets a copy of the blood tests. My Physician Dr H is going to ring him this morning. Even though I've had 5 Neupogen injections yesterday the Neuts went from .16 to .10. I think I am to have blood today as HB was 72.

When I returned from Brisbane I put in paperwork to Travel Office as had paid for my own trip to Brisbane. Now I get a letter back to say thank you for your recent application but unsuccessful because treatment is available locally which of course is not correct. I don't know if letter (the run of the mill type) is referring to my request for money back or next Brisbane trip. If the former how come the return journey was approved or the latter why were the 1st 2 cycles approved ? I can't do much about it from hospital as not able to download Appeal Form here. I am annoyed about it.

[Chirley]

What are you going to do if you can't get the travel subsidy? You can't be expected to pay for the plane flight every month! Maybe they have started providing injectable Vidaza to regional centres. It makes sense to send the drug to you rather than you travelling to the drug especially as the Mater seem very good with treatment.

Maybe it's worth a phone call to your State MP....I like to see them working for their constituents...reminds them why they were elected!

[Glenda H]

Originally Posted by Chirley

What are you going to do if you can't get the travel subsidy? You can't be expected to pay for the plane flight every month! Maybe they have started providing injectable Vidaza to regional centres. It makes sense to send the drug to you rather than you travelling to the drug especially as the Mater seem very good with treatment.

Maybe it's worth a phone call to your State MP....I like to see them working for their constituents...reminds them why they were elected!

I think there is only a couple pharmacies in Brisbane that stock it one of those being the ICON pharmacy on Milton Rd. I am sure I would have been informed by Dr F if anything different.

[Chirley]

I used to get my Vidaza intravenously and it had to be prepared and administered within an hour so I wasn't given any choice but to have it at a treatment centre near the pharmacy.

I used to get mine from the Maters own pharmacy...at least that's who I paid my $46,200.00 to. Why not see if Dr F would be willing to try to get the Vidaza sent to Rocky? Much easier for you. Then you'd only have to travel and see him for your BMBs etc.

I hope that Cat 4 (potentially) cyclone doesn't veer south....QLD doesn't need another natural disaster!

[Glenda H]

Originally Posted by Chirley

I used to get my Vidaza intravenously and it had to be prepared and administered within an hour so I wasn't given any choice but to have it at a treatment centre near the pharmacy.

I used to get mine from the Maters own pharmacy...at least that's who I paid my $46,200.00 to. Why not see if Dr F would be willing to try to get the Vidaza sent to Rocky? Much easier for you. Then you'd only have to travel and see him for your BMBs etc.

I hope that Cat 4 (potentially) cyclone doesn't veer south....QLD doesn't need another natural disaster!

I don't think the drug Vidasa can be transported to Rocky.