Low white count and starting Vidaza at age 68

[Peachy]

Greetings from Colorado -

When I last posted in June my husband were on our way for a 6 week trip before starting Vidaza. We were at low altitude and he felt great so we skipped having our regular blood test. On our return his HGB had dropped to 7.6, WBC 1.9, NEU (ANC) 1.0. He was then given 2 Units of blood and an Aranesp shot. One week later his HGB back to 9.1, but his whites dropped - WBC 1.0, NEU (ANC) 0.68. We are to start Vidaza on Sept 9, as we are having 30 folks for dinner in a couple of weeks. Dr. suggested we wait until after the party.

Dr. also related that his counts would drop with Vidaza. I’m not sure what happens if his whites drop below 1.0. Dr. has not suggested any shots for increasing white cells and gives the impression that they may not do much. My husband has been reading about Neupogen and the bad side affect it may cause. Not sure where to go from here and not sure how we can even start Vidaza with his white count already so low.

We realize we will have to be much more careful when around people, as risk of infection is high and lucky he did not catch the cold I had 2 weeks ago. This is the first time I have been really scared since we first heard of his change in diagnosis to RAEB 1. We seem to feel that MDS is taking a stronger hold on him. We have done so well with Aransep, but now all is changing.

[Birgitta-A]

Hi Deb,
You know we are all different and MDS is not one disease but many diseases that share some symptoms (= a syndrome).

Many patients with low neutrophils travel, go to big parties and so on and manage well. I am afraid of neutropenic fever and since I had that 2007 (after 3 infections) and I always live like I am neutropenic even when my WBC are OK just to be on the safe side.

Here is info about neutropenia http://www.neutropenia.ca/about/livi...277b7622ac9394

I have been taking Neupogen (now the drug I am taking is called Zarzio) Sept 2007 to Nov 2011 mostly once or twice a week. Now I have started to take the drug again March 2013 when Thalidomide was increased to 50 mg 7 days/week instead of 50 mg 4 days/week.

I have never had any adverse effects except when I had to take the injections every day during 9 days to keep the neutrophils up when I started with Thalidomide 2010. Then I got pains in the knee joints. Neupogen does not increase blast cells as several studies have showed.

Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Supportive therapy until June 2010 when I started to take Thalidomide + Prednisone with positive effect until Feb 2013. Now trying Revlimid 5 mg/day 21 days in a 28 days cycle with Prednisone. Eventually positive response.

[sbk007]

Peachy, I'm 2 days away from completing round 4. My Doc warned me about the WBC & neuprogen before we started. Before my first round WBC was 5, HGB 7.5-7.9, and platelets 130k. After the 7 days of Vidaza 150mg. My WBC went as low as 2.5, but the hgb,and plates were unchanged. This was 3 weeks after the last infusion. When he saw the WBC @ 2.5 he said I can send you through and follow up with neuprogen shot or wait a week, lets do that. The next week my HGB was over 10, plates, 238,000, and WBC came back up to over 3. After the second round My WBC held up at 4.2 so I didn't need the neuprogen. The guy sitting next to me came in for a neuprogen injection, and I heard the nurse tell him that many patients have no side effects at all, and if you do its usually from the back or collar bone(I think) and to take a tylenol it doesn't last more than 24 hrs. Vidaza is a well tolerated drug, but my doc wrote me a script for Zofran to take an hour before infusion for nausea rather than have them infuse me with it. The nurse told me that they rarely inject it anymore because of the skin irritation issues. Anyway hope that puts your mind at ease a bit. The worst side effect I experienced was constipation one day, but because it lasted 1 day it might have been something else. Good Luck!! hope your husband gets a response after round 1.

[billyb]

Deb, its hard to say what exactly happens if wbc drops below 1 ( execpt your at more risk for infection ), to get a full picture of your wbc you have to look at your differentials. My wife has developed an infection with a wbc at 1.5 and felt fine when it is 0.8. Some days you have more better working cells. You just have to get used to changing the way you do things, not nessessarly stop doing them ( going out and stuff like that ) There are times going through this process when it is necessary to stay away from crowds and times when its not. We dont take neuprogen, for us it isn't good, but it works well for some folks, all treatments, growth factors, and different medications will scare the dickens out of you when you read about there side effects, ask you doctor if neuprogen will work for you, dont assume what he is thinking, and ask him to explain why it will or wont in a way that you can understand it, and it will relieve some of the stresses that are associated with trying to understand with what is going on with the disease. Ya'll are in our thoughts and prayers...Billy and Tina

[Darice]

Hey, Deb!
We need to get together and talk. Jens has pretty much been there and done that ... lots of co-morbidities and he is a couple of years older than your hubby. Let's try to get together for coffee and a visit in the next week or so.
Darice

[Peachy]

Brigitta-A - Thanks for sharing and the attachment. I am trying to absorb it all! Not sure I understand what Neutropenic fever is, but know our last bout of pneumonia was enough sickness for now.

Sbk007 - Thanks for sharing your results. Am in hopes my husband will react as favorably with the Vidaza as you did. Will just have to keep a good watch on his whites, as we are starting at 1. Maybe for a little while we will just have to stay home. We socialize a lot, but have learned not to shake hands when necessary.

BillyB -The Doc has indicated that the use of neuprogen is not or may not be helpful. I will talk to him about his reasoning when we next seem him. Thanks for the suggestion. I ask a ton of questions (sometimes driving my husband crazy) but did not think to ask that one. I believe his plan is to give us a pill for nausea to use if necessary. He also said we will be attending a "class" about the Vidaza so that we will know what to look for, when it is important to see or not see the Doc, etc.

Darcie Back to you via email. Am off to Branson. Seems like we never stay home - though that will change starting in Sept.

Thanks to all for your kindness and sharing. This is a great place for me to learn and talk. Peachy

[Birgitta-A]

Hi Deb,
Neutropenic fever is fever you can get when your neutrophils are low - many patients manage well almost without neutrophils (lower than 0.5) but I don't belong to them.

When your neutrophils are low (less than 1.5) you can control your temperature at least every night - perhaps in the morning too. If it is high you have to go to the ER. They will take a lot of tests and X-ray of the lungs to try to find the infection. They often cant´t find it but they have to start treatment at once and hope that they have choosen an effectiv antibiotic drug otherwise you can get sepsis.

Remember that infections are very dangerous for MDS patients.

Very good with a class about Vidaza !
Kind regards
Birgitta- A

[Sally C]

When my husband's neutrophils hit 0.0, our oncologist gave me a piece of Rx paper. She wrote 4 things for me to do if Don started running a fever. Go straight to the ER, take his CBC with us (with the 0.0 neutrophils), tell them to start an antibiotic STAT and get the on-call hematologist to ER STAT. He started a fever that very night and we went to the ER. With paper in hand I was very calm as I knew what to do and say. And when you start throwing medical lingo around like "STAT" - it does get their attention.
He was in the hospital with an IV of antibiotics 24/7 for 2 weeks and then sent home with IV antibiotics through his PICC line for another 2 weeks. She treated him as if he had sepsis. She told us no buffets (which we still don't do) and not to drink tap water. When I went to our water department web site I understood why she said that. It's amazing what is allowed in public water. As Birgitta said - you have to be really careful when your WBC/neutrophils get so low. This was when Don was on our oncologist's "death list". I don't mean to scare anyone but it is very serious when the immune system is so compromised. Masks, no company in the hospital or at the house - not even family - and especially!! not to be around small children. We were told we couldn't be too careful.
God Bless,
Sally

[sbk007]

Deb, After the 1st round my heme checked my blood every week till I was ready for round 2. Some have blood pulled every day of treatment & monitored more closely. Also, if the pill prescribed for nausea is Zofran(ONDANSETRON HCL 8 MG), and you have problems getting authorization b/c they're like 18.00 a pill(8MG). You can get them @ Costco or Sams for a fraction of the price cost me 27.00 for 60 pills. My insurance wanted him to prescribe something different first and wouldn't approve the generics so I saved myself the aggravation by paying the 25.00 out of pocket.
Take Care, Steve

[billyb]

Deb, there are certain things I wouldnt do until things are under control and that is DO NOT cut the grass, and DO NOT work in the garden, you can aggravate spors into the air, the mask is a great thing, my wife uses it to this day, not nessessarly for her protection, but when your wearing a mask people tend to keep there distance from you, and there not getting their germs all over you

[LizR]

Deb,

Steve is right. Zofran or ONDANSETRON HCL 8 MG is the best med for Vidaza. We went through 3 months of another med (Compazine or the generic Prochlorperazine 10 mg) and it didn't work all the time. The nurse explained that even though they both prevent nausea, they do it differently. The first one we tried was for nausea like in motion sickness where Zofran works in the stomach. Not sure I understand it but it works well. The past 4 cycles have been much, much easier.

Bob gets Vidaza injections instead of IV and had just a little redness at the injection sites. No itching at all. The best part about injection is it's quick. In and out of the office in about 15 minutes. His counts do drop but rebound fairly well and no issues.

[Chirley]

I had to sit in the doctors waiting room for a long time because they were running late. When I got to see the doctor I told her that it was scary sitting in the waiting room because a lot of people were coughing.

I was told that every time I need to see the doctor that I was to tell the reception staff that I was susceptible to infections and was to be placed in an empty room to wait for my appointment.

Waiting to see doctors with sick people in the waiting room would have to be one of the worst infection risks.

Regards

Chirley

[sbk007]

Originally Posted by LizR

Deb,

Steve is right. Zofran or ONDANSETRON HCL 8 MG is the best med for Vidaza. We went through 3 months of another med (Compazine or the generic Prochlorperazine 10 mg) and it didn't work all the time. The nurse explained that even though they both prevent nausea, they do it differently. The first one we tried was for nausea like in motion sickness where Zofran works in the stomach. Not sure I understand it but it works well. The past 4 cycles have been much, much easier.

Bob gets Vidaza injections instead of IV and had just a little redness at the injection sites. No itching at all. The best part about injection is it's quick. In and out of the office in about 15 minutes. His counts do drop but rebound fairly well and no issues.

Liz, Compazine is what the ins co. wanted me to use and so wouldn't approve the 25.00 Zofran generics. I think Zofran cuts whatever it is that triggers the nausea reflex directly by target. Its very popular for morning sickness. The other option was Zofran by IV but that's 20 minutes and wasteful if you can just pop a pill an hour or 2 before the shot or infusion. Bobs lucky to tolerate the shots.

[Peachy]

Birgitta_A - Thanks for the explanation of the Neutropenic Fever. You are an inspiration.

Sally C - Thank you for you insight. Making changes to living life is difficult at best. I had not read about tap water. I do appreciate your heads up and I will be prepared. ER's are the worst place for anyone, much less someone who has a low or no white count. I have experienced the "wide eyes" of nurses/docs when you use hospital speak, but it has been years. I hope Don is doing much better now.

Skb007 - not sure what the Doc has in mind for nausea, but will keep Zoran in mind.

BillyB - Too late about cutting grass,, as my husband did that yesterday. The yard is where he spends most of his time. I will keep a close eye on him. Would love to get him to wear a mask, but until there is no other option I have to keep working on him.

LizR - My husband will be doing shots too. Am in hopes he reacts as your husband did.

Chirley - We don't usually have to wait long. The office we go to has plenty of masks, but I will keep going into the back as an option.

Thank you all for your input and insight. There is nothing like experience to help one along in a new situation. I appreciate all of you and send my hugs and well wishes. The strength each of you has and your fighting spirit comes through. I hope to be as strong as each of you. We are thinking this is our last trip for awhile. Peachy