Neutropenia

[Mseth]

Dear Birgitta,

I wish you all the strength you need to deal with this. Please take care.

Regards.

[Birgitta-A]

Thank you Mseth! Hope your mother will continue to be stable!
Kind regards
Birgitta-A

[Sue H.]

Dear Birgitta,
Just wanted to send good wishes and prayers to you too and am sorry that you are going through a difficult time. I always appreciate your wise, caring and inspirational posts. You must be a very special and well-loved person!
Greetings and many, many healing thoughts from Switzerland!
Sue H.

[Birgitta-A]

Hi Sue!
Thank you for the kind words, greetings and healing thoughts !

Yesterday I had to start taking antibiotics again for a sore throat - I think it is better today. The bacteria are probably from myself because I don't see many persons and they have hopefully been OK.
Kind regards
Birgitta-A

[Sue H.]

Dear Birgitta,
Glad the sore throat is starting to feel a bit better. Hopefully the antibiotics are kicking in to help.
As I write, it is snowing (finally!) here in Switzerland. So pretty. Makes everything so quiet and beautiful.
Wish you a good day today Birgitta. Thinking of you!
Warmest Wishes,
Sue

[Birgitta-A]

Hi Sue!
You know I feel almost OK today except that I have candida (fungus) infection in the mouth/throat since Dec 2014 and is very, very tired. My pulse is a little more than 100 (it was 60 during the summer 2014) due to cardiomyopathia (damage to the heart) because of iron overload.

Thank you for the warm wishes! We still don't have any cold weather in Stockholm - good that the snow makes it beautiful in Switzerland.
Kind regards
Birgitta-A

[Sue H.]

Good to hear that you are feeling a bit better Birgitta. Just a thought about the throat problem.... here in Switzerland we can buy a natural product from the pharmacy called "Hals Wohl" (clear throat) by A. Vogel. My husband swears by it - when he was in the hospital he had a room mate once who was very sick and constantly troubled by sore throat and coughs. He gave him one of these tablets to try and the guy said he had the best night (no coughing or sore throat) for ages! It's a natural product - we also use something called Molkosan - you add it to water and drink it or gargle with it. Also natural (also a Vogel product) and great for throat problems. Maybe worth a try if you could get hold of them.....
Hope today was a good day...
Healing Wishes,
Sue

[Birgitta-A]

Hi Sue!
Thank you for the info about Hals Wohl and Molkosan! We don’t have Hals Wohl in Sweden – only Molkosan. You know I have trouble with my intestines since I started to take Exjade during the spring 2014. Since then I can't eat lactose since it makes the problem worse so I dare not try drugs made of milk.

I have been taking antibiotics again since 2015-01-16. My stomach is worse but my throat is OK. We don't know when I will get next infection.
Kind regards
Birgitta-A

[Sue H.]

Hi Birgitta,
Such a complicated business with all these drugs and their side-effects.
I so admire your strong, positive spirit in dealing with all this. As many people have said, you truly are an inspiration! I wish you an infection-free time and a good week.
Warm wishes,
Sue

[maggiemag]

Hello again, Birgitta. I also have cardiomyopathy, although mine is idiopathic non-ischemic dilated. I was wondering if you are on any beta blockers and/or Ace inhibitors to decrease the work of your heart, which as you know is already working too hard with your anemia. Even if the drugs don't help decrease the size of your heart, you might be more comfortable with a lower rate. Just a thought!
Mags

[Birgitta-A]

Hi Sue and Mags!
Sue: yes. Adverse effects are always great problems.

Mags: I am going to see my doctor tomorrow. Perhaps he will give me beta blockers or a similar drug. These drugs of cause have adverse effects too.
Kind regards
Birgitta-A

[Chirley]

Hello Birgitta, I'm pleased you're still doing well.

I used to take Propanolol for about 30 years for benign familial essential tremor which is apparently a very Scandanavian trait. (My father and one of my Swedish uncles had it as well. Anyway, I digress. I found that Propanolol had few side effects apart from lowering my blood pressure a little. Unfortunately it means I can't take it any more so I just have to tolerate the tremor and typing, writing, holding a mug of coffee etc is now a lot more difficult.

If you are looking at a very tried and tested old fashioned beta blocker the old Propanolol is just as good or better than these new drugs these drug companies are trying to market at fifty times the price. Well, this is my opinion any way.

Wishing you well.

Chirley

[Cheryl C]

Are you still in hospital, Chirley? If so how are you?

[Chirley]

Yep, still in hospital but being discharged tomorrow afternoon. J Tube insertion went well. Feeds needed tweaking because the tube was inserted further down the Jejeunum and the osmolality was causing problems. So noW I've been moved from 1.5cal/ml at 72ml/hr for 14 hrs a day to 1cal/ml at 110ml/hr for 14hrs a day so basically I'm gone from 1l a day to 1.5l a day to stop bloating and cramping and dumping. It's all a matter of tweaking rates etc.

So grateful to have my nasal tube out. Now, just to get some swelling down from my legs.......I had to be given an albumin infusion on Monday night post op when my BP crashed along with a few litres of hypertonic solution and my legs swelled up and it just doesn't want to go away. My BP is sitting at 80 systolic most of the time now despite steroids etc but does still drop to 70 at times yet I'm full of fluid...I can't figure it out.

Anyway, when I get home I'm sure I can try to mobilise a bit more and shift some of the fluid. I wonder how they would ever be able to measure my actual weight without the extra fluid but hey, that's the dietitians problem.

Thanks for asking.

[Cheryl C]

You must be SO looking forward to going home Chirley. Hope it all goes well and that you are able to get rid of the excess fluid. I'm sure exercise will help if you can manage it. Your pussies will be delighted to see you I'm sure. We have just adopted a male Burmese 2-year old. He wasn't performing as a stud. So nice to have a cat again but he's only ever been caged so will take a while for him to have the run of the house. He's freaked out just by having a whole room at present!

Birgitta - I hope you are seeing some improvement in your blood counts? Thinking of you too.

[Birgitta-A]

Hi Chirley and Cheryl!

Chirley: My pulse went down from 100 to 90 and my doctor thinks we should wait and see if it will continue to decrease without drugs.

Hope you will manage with the tube!

Cheryl: My counts have not improved - I still receive 2 units of blood every week and take a drug like Neupogen 3 times a week for my WBC. My platelets are low but OK for me (last count 48). As expected I now have 2.5% blast cells in my blood - the AML dx is not far away.

I have asked my doctor if I could get "home care" - nurses will come to my home for txs and blood tests so I don't have to go to the hospital. I will get that after two or three weeks and I am looking forward to be able to stay in my home.
Kind regards
Birgitta-A

[Cheryl C]

Thank you for telling us your situation, Birgitta. That in itself takes courage. You will be in so many members' thoughts and prayers I'm sure. It's great that you have the opportunity for home care. You are a blessing to all of us with your knowledge and wisdom.

I hope you don't mind if I ask you a couple of questions.

Firstly, what were your WCC/Neut levels when you started on Neupogen?

Secondly, I have been having biopsies in February every year and while they are unpleasant at least they give a clear picture of the marrow condition and in that sense are reassuring. At my last visit the locum for my haematologist said that there would be no need for a biopsy in February because my blood counts have been reasonably stable, although from my own charting of results each year since diagnosis the average WCC and neuts have dropped 10% or more. All the other counts are quite stable. Am I being silly?

[maggiemag]

Birgitta, I have taken the beta blocker Carvedilol and the ACE inhibitor Lisinopril since I was diagnosed with the cardiomyopathy years ago, with minimal side effects. Both are generics in the States so aren't expensive drugs. My BP haas always been quite low so I do take low doses of these drugs as they can lower my BP. My resting heart rate now runs about 54 at rest. But my heart has remained relatively stable on these drugs. Birgitta, I hope you have a port or a central line of some sort! That's a lot of sticks!

[Birgitta-A]

Hi Cheryl and Margaret!

Cheryl: You know I have been taking Neupogen or similar drugs on and off since I had neutropenic fever (almost sepsis) the first time Sept 2007. Sometimes I take one injection/week and sometimes one injection every day - that depends on the neutrophils.

At X-mas my neutrophils were less than 0.1 after a throat infection though I had been taking Neupogen every day. When my temp was 38.5 I went to the ER and stayed in the hospital 6 days. I received antibiotics iv and Neupogen every day. When I went home my neutrophils were still only 0.1 (very low for me). I continued to take Neupogen every day and after one week my neutrophils were 2.6. Since then I am taking 3 injections every week.

May 2006 I got my dx and since then I have had 6 BMB. I don't think we have to get a BMB every year even if our counts are lower. What we have to look out for is blastcells in blood (that I have got now). My doctor asked if he should perform a BMB and if I wanted Vidaza but we both know that I probably only will get adverse effects since my bone marrow has been very fibrotic since dx.

Margaret: Thank you for the info. My pulse is still decreasing - after the blood I got yesterday it is only 80 and I feel less tired.

I have a port that now is a little more that 8 years old - it was inplanted for Desferal infusions (iron chelating).
Kind regards
Birgitta-A

[PaulS]

Hi - I have really appreciated you posts and compassion - and found them helpful and encouraging. I hope you find comfort and peace and are surrounded by those you love. You are in my thoughts and prayers.

[Birgitta-A]

Hi Paul!
Thank you for the kind words! Yes my two daughters, three grandchildren, one sister, two brothers and close friends often visit me and are helping me with everything I can't perform myself.

Shouldn't you try Aranesp or Another EPO drug?
Kind regards
Birgitta-A

[PaulS]

I'm so glad to hear. At 55, living another 20 years to be surrounded by loved ones and friends sounds pretty good - I know you've been through a lot to get there - you are inspiring.

We tried Aranesp about a year ago without much luck. I've just been through my second round of Vidaza and am hoping to be one of the lucky ones for which it works for many years. So far it seems to have lowered my WBC's (which had been normal) and my platelets which had been declining - my hemoglobin seems to re rising and falling along with transfusions - Its just below 7 now (which feels pretty bad) and I'm going in tomorrow for more blood. I fear a transplant is in my future - but try to remain positive - I really hate the transfusions and don't know how you have been able to persevere so long. I'm adjusting to not being able to hike up mountains for fun - but am grateful to have a doctor who seems determined to keep me able to ski down them - and a great wife, family and friends.

Enjoy every day!
Paul

[Birgitta-A]

Hi Paul!
Hope Vidaza will work for you !
Kind regards
Birgitta-A

[Cheryl C]

Birgitta - thank you for your wise advice again!

Wonderful to read that you are surrounded by loving family and friends and have the support you need.

[Peachy]

Hello Birgitta - I have been away from the site for far too long, so am just becoming aware of your struggles. You are and remain an inspiration to us all. Peachy