Nellie's Journey on Vidaza

[helen c.]

good luck to nellie my husband is supposed to start vidaza again next week this will be his second round this time hoping his counts improve last year it took 3 rounds b/4 results improved.his red is at 11 and white at 3.4 and platlets are up to 86 frome 56. good luck all

[ESeda]

Thanks Helen, I appreciate the thoughts.

Got to the hospital about 10 am yesterday and found Nellie with high fever again. Once again it improved to normal, but after 4-5 hours it started up again. In addition she had begun having rose colored urine. Not sure what that means. No body can tell me what is happening. With the fresh blood they gave her, her counts shot up to 11+, WBCs over 5 but platletes still at 32.

They want to get the port put in but have to get the fever under control. They brought in an Onc/surgen to do the port instead of having it done by radioligy doctor. In the eve the infectious decease doctor came by. She said nothing could be found in the cultures so far, but that they were still looking. Other cultures still not cooked. They are checking for a URI but nothing yet.

Just now got a call from Dr Morris from Nellie's bedside. He updated me on what he could see was going on. He couldn't tell me much more than I already knew. Some adjustments on meds and he is ordering a BMB stat to see where we stand. Talked about the need maybe for the mini transplant sooner rather than later but we need to resolve her more pressing issues. He is calling in her gastrologist to re evaluate her for the bleeding in the urine, vomiting with some blood, and her lupus doctor for her input. Poor girl had another bad night.

Let you know more later today. Keep her in your prayers.

Eli

[ESeda]

Got to the hospital Thursday morning at 10 am. Nellie had fevr again during the night. Fever subsided, they did the BM aspiration right there in the hospital room about noon. Dr Morris wanted her comfortable with no pain, so she got a shot of morphenie. She slepted most of the day and remained groggy through out the evening. Fevers went away, BPs good, right hand was swelling due to IV taken for another culture. Seems everytime her temp rises over 102 the do another culture of the blood. They take some blood from the pick line and some from a perifial line.

I decided to stay with her over night in her room. She was doing well. About 3 am her fever started again. Lasted for a shorter time, broke, but when the fever was braking her blood pressure suddenly dropped from 125/65 to 72/53. It was taken because her fever was high 102.9 but her skin was cold and clammy. Thought it may be low blood sugar but it was not, it was at 220. The doc had scheduled a saunagrame of her had for the swelling, and aother doc ordered a CT Scan of her belly for the bleeding in the urine, vomit and diarrea. By noon her BP had improved so they took her to do the saunogramme. Didn't take long. By the time I went and had lunch, came back and sat for a few minutes, she was back. In good spirits, moving from the gernie to the bed on her own.

Spent an afternoon napping and trying to catch up on lost sleep. By around five pm the BPs were normal again and she drank the second bottle of Berium liquid and was taken for the CT Scan. I went for dinner, came back and she returned shortly. Good spirits got off the gurnie on her own power, went to the bathroom, got into bed, doing very well. She has been on a liquid diet for the last few days because of the diarea and blood sores in her mouth. Those sores are terrible. They bleed, hurt, she can hardly swallow. The prepared a "Magic Mouthwash" to help with their healing and making her more comfortable. Nellie saw that I was in no condition to try to sleep this night in that recliner and insisted I go home and get a good nights sleep. I left her about 8 pm. Once again they took her temps, normal 98.2, BPs 128/65. All good, still weak but otherwise doing well.

I got home and crashed, not normal for me to go to bed at 10 pm. By 6 am I was up.

The floor doctor, Dr Ellis had come by the room sereral times during the time Nellie's BPs were low. At last he said the low BP was due to the combination of BP meds and other drugs which resulted in the low BP, the results of the sonograme showed nothing wrong with the hand and she should be fine. The infectous decease doctor came by and said all looks well and sees nothing to be alarmed about. Wounds and sores all healing well.

I am sitting here, it's 7:11 am, and I am wondering, what could it be. Yesterdays CBCs show counts are dropping again. If her marrow showed so much improvement four months ago, blasts dropped, chrom abor gone, why are we not seeing the counts holding on their own??? And now, why suddenly all the fevers?? I am hoping the BMB shows nothing. Isn't that strange. But if it doesn't, now what?? Nellie was doing so well. The Vidaza seemed to give us so much hope. No need for tx,s, great results on the last biopsy, counts holding but never really taking off on their own. And now, unexplained fever, two times in the hospital in less than a month. And all her doctor can say is that she is very sick. I want to help her. She has been such a good wife and mom. Always giving, never taking. All she wants is to enjoy her grandchildren she loves so much. She deserves at least that.

Please God, let them fine out what is causing the fever, and let it be something easy to fix.

I love you Nellie.

Eli

[Vera W]

I pray for you both several times a day. Maybe her counts are low because her body is so busy fighting off the extra infections and the problem with all the sores. You know our temps get higher when our immune system is fighting so we have to believe that as soon as her body resolves this she will start to get better,You both hold a picture in your mind of better times! I will be gone till Tuesday. My transplant date is April 10 TH.take care and God bless You both!!

[ESeda]

Thanks Vera, be safe and good luck.

Great news. Nellie has had no fever for two whole days and more. BP regulating, sores almost gone, no more bleeding in urine or stool. Doctors can't put their finger on any one thing that caused all this. Maybe low platletes started all this who really knows. But all her counts are still lower than previous times. Now we need to get a port placed on her left side. There is a pick line still in her left arm, but Dr Morris still wants to have it removed, just as soon as we can get the port placed. This time by the surgeon.

All the tests, cultures, sonogrames and ct scans are clear. Hopefully the BMB will not show any progression of the MDS. Does anyone know if there is a chromosome that directly effects the platletes?? I may have missed something in my studies of MDS that answers this for me.

Well I left Nellie in the hospital tonight in good spirits and walking me to the door. Good night babe, see you tomorrow!

Thanks for your prayers.

Eli

[Birgitta-A]

Hi Eli,
Like Vera I think the drop in Nellies improvement was due to an infection. It is very common that they never find the cause of the initial infection - they have to treat it and hope that they give the best antibiotics.

I have never read anything about a chromosome aberration that have an impact on the platelets - all infections decrease the platelets.

We all hope that Nellie will continue to recover - she is obviously getting the very best care.
Kind regards
Birgitta-A

[ESeda]

Got bad news from Dr Morris today. Nellie's BMB results are in and the illness has progressed to 18% blasts. This is sudden. Nellie doesn't know yet. Dr Morris wants to tell her himself, in the morning.

Nellie had her port put in today and is doing very well. Doctors say she probably will come home tomorrow, if she takes the news well. Dr Morris usually comes in about 7am. I need to be there when he tells her. So I better get to bed early. Hope I can sleep. God Bless

Eli

[Ruth Cuadra]

Eli,

So sorry to hear this news. Nellie is strong, especially with you by her side. I hope Dr. Morris has something positive to offer her in terms of treatment.

Thinking of you,

Ruth

[Birgitta-A]

Hi Eli,
Then you were right when you asked for a new BMB when Nellie started to have fever and infections.

Today I lit one candle in the hospital churh for Nellie and one for Rob, that will have a SCT tomorrow.
Kind regards
Birgitta-A

[ESeda]

According to Dr Cogle, MDS Specialist in Gainesville, along with Dr Morris agree that Nellie is advancing to AML. The recommendation is a full month in the hospital for one of two recipes of chemo. She will need constant care with transfusions and prevention of infections and there will be high toxicities of major organs after the chemo.

A transplant now will result in relaps soon after. We need to improve her condition as soon as possible. Then maybe a transplant.

I am afraid she will not make it through this intense regimen. When I left her in the hospital tonight she was having difficulty with the port they placed yesterday. Bad hemotoma and some bleeding. She was looking forward to coming home tomorrow. Dr Morris has yet to tell her what condition she is in and what awaits her. Tomorrow morning may be when Dr Morris will tell her.

Currently no fever. BP good, counts holding well, more platelets infused today to help in healing the port area.

Thanks for your thoughts and comments Ruth and Brigitta. God Bless you guys for being there for me. Keep up with the prayers.

Eli

[ESeda]

After two weeks in hospital, Nellie is home. Dr Morris spoke to her yesterday morning about her change in conditions. She took it well. First thing out of her mouth was "I will do what ever you say Dr."

Well after a Mugga Scan of the heart, the Doc said she can go home. Still minor bleeding at the site of the stitches on her chest. The nurse redressed the wound and sent us home on condition that if the bleeding increases I take her to the ER. No problem. Since she entered the hospital she has had 8 units of blood (red cells), maybe 10 bags of platelets, two bags of plasma and many other bags of antibiotics, vitamins and minerals. Whew. Don't understand how they can get all that in there.

Will see Dr Morris in one week to discuss more completely the exact treatment he plans and when to start. In the meantime I am to take her to the ER if problems arise.

She is very tired and slept like a log last night. She commented this morning how wonderful it was to sleep through the night without being poked every couple of hours. I checked her vitals today and all is well. The hematoma from the procedure done to place the port has grown covering half her chest area. Scary looking. But she has hematomas all over her body, wherever they stuck her. She says she is feeling useless. I tell her no, your not useless, your sick, but you are getting better.

Does any one have suggestions or comments on treatment at this stage of illness?? 17% blasts, don't know the cetogenetics yet. Do you know someone that has gone from MDS to AML and treatment? Which drug were they on? What should I, as her caregiver and advocate be alert on?

Thanks for being there for Nellie and I. All your comments and prayers are so helpful to us.

Eli

[Birgitta-A]

Hi Eli,
Good for Nellie to be at home !

In Sweden high risk MDS is treated as AML with daunorubicin and ara-C. Then the doctors can give maintenance treatment with Vidaza. Here is an abstract from my doctor Michael Grövdal.
http://abstracts.hematologylibrary.o...urcetype=HWCIT
Kind regards
Birgitta-A

[Vera W]

Eli,I wish I could give you some earthshattering medical advise but I don't have it. All I can say is to keep encourageing and loving Nellie and never give up hope. I am so glad Nellie is home. You both are in my prayers! Take care, Vera

[Ruth Cuadra]

Eli,

I think you have been doing a great job of keeping on top of Nellie's medical needs and being there for her as her husband too. You may find that even though the doctor says she has progressed to AML that not much has changed. It's mostly a matter of the blast percentage as to when the disease is called MDS/RAEB-1 and when it's AML. You need to stay alert to signs of infection, but you already know that. If you can help her get the rest she needs and enough nourishment to keep her spirits up, her body will have a chance to get better.

Regards,
Ruth

[ESeda]

Thanks for your thoughts and comments ladies. Sure helps to comfort me.

Had to take Nellie to the ER today. The discharge order from last Thursday stated I should take Nellie to the ER if bleeding did not stop. It not only did not stop but she showed signs of extremely low Hbln. Sure enough, all her counts dropped. plts down to 2,000, Hgbln 7.2 and whits 2.5.

She will stay tonight for txs and to see Dr Jordan, who placed her port, in the morning. Dr Morris will also come by in the morning. Don't know if she will be able to come home then or they will wait until the bleeding stops, completely.

Thank all of you who are following our journey. Pray we are successful. God Bless.

Eli

[Beth I]

Eli,

I add my prayers to those of everyone else for Nellie's recovery. My thoughts are with you both.

All the best,

Beth

[helen c.]

my prayers are also with nellie

[ESeda]

Nellie had 11 units of plateletes and 2 pints of red cells, during the night. Tuesday morning she looked great. Dr. Jordan checked her out and felt the port was causing the problem, would soon become infected and had to come out. However he would consult with Dr Morris before making the final decision.

The rest of the day was good. No fever, no hbp all was looking good. Nellie even said the port area felt better and thought it was healing. We also learned the port was scheduled to come out next day. Well the good temp didn't last long. Early Weds morn, about 3 am, the fever started. By the time I came in a 7 am, her fever got to 103. Not good. Both Dr.s Jordan and Morris came by and confirmed the port must come out. Nellie's Hbgn was good at 9.5, whites at 5.2 and plates at 85. All good. So it was a go to remove the port. In the afternoon the port was removed and Nellie got back to her room near 6:30 pm. High fever, 102 degrees. More tylenol and cold compresses. I left her sleeping quietly, hoping she will be much better in the morning.

Nellie and I both were hoping the port would work out. She did not want any more things in her arms. Well, it looks like another pick line in our future. Won't be for a few days though. Dr Morris wants to get her well and strong before we plan the next step. Meanwhile, the desease is growing faster. We can almost feel it's breath down the back of our necks. Fortunately Nellie is up for the fight. She wants to live and I want her to live. So regardless of the stumbling blocks in front of us, we are committed to fight for survival. We want to be a winning statistic for Vidaza and any other drug the was created to fight this decease.

Keep on praying, God is Good.

Eli

[debbie2008]

how i admire the strength and stamina of both you and nellie. you are an amazing couple and deserve the best of outcomes. i am sure your doctors feel and same way and will do whatever they can to conquer her disease.

you are an inspiration to those of us who are caregivers and a few steps behind in the progression of mds. i can only hope to maintain the same level of commitment and hope that you have.

i have been praying for you both since reading your posts. may God bless you both.

[ESeda]

Thanks Debbie, your prayer mean so much to us.

Ports out, no pick line yet. Still working off new perifial line for more reds and plates. High fever again yesterday but it went away by noon. Nellie looking good again last night when I left the hospital. Keeping my fingers crossed that she won't have any more fever.

Looks like she was loosing lots of blood from the cut made when they put the port in. She has been getting tx about every 3-4 days. Maybe now she can go longer and have a chance to build some strength. Once she does that, it's back into the hospital for the stronger chemo. We have to bring that blast count down to zero, if we are to continue with her treatment. It's like looking for the open window so that we can jump out. Who knows where we will land???

Gotta get ready to go to hospital, will check in later. Remember, keep on praying.

Eli

[Ruth Cuadra]

Originally Posted by ESeda

It's like looking for the open window so that we can jump out. Who knows where we will land???

You made me chuckle today, Eli! What a great sense of humor you have in spite of all you and Nellie are going through. Keep up the good work.

Regards,
Ruth

[ESeda]

I will try Ruth, thanks.

Nellie looked and said she felt really good Friday, all day. Reds at 11.2, whts at 5.2 and plts going down again at 31. Two days ago they took samples for another blood culture and the puncture wound is stll bleeding. The surgery area on her chest also is still bleeding. It seems that she bleeds at whatever level her plates are. Why are the plates not doing their job properly. Are there reasons anyone can thinki of that we can look into?

Dr Morris wants to keep her in hospital until Monday. I believe by Monday Nellie will need more plates. No more fever the last 36 hours. They want her to start walking the halls this weekend. Nellie wants to spend some time with our great grandson this week who will be visiting from SC. Lets hope she is able to do that.

Gotta go, see ya later.

Eli

[Dick S]

Originally Posted by ESeda

The surgery area on her chest also is still bleeding. It seems that she bleeds at whatever level her plates are. Why are the plates not doing their job properly. Are there reasons anyone can thinki of that we can look into?



Eli

As you know platelets are what allows your blood to clot. Low platelets.....low clotting. Low platelets can cause bleeding. I'm not surprised they are not doing their job, if they are low.

[helen c.]

has anyone heard from nellie today?

[ESeda]

Hi Dick, yes your right, but I noticed with plateletes somewhat improved she still seems to bleed even in small needle pricks. I just was thinking that there maybe a cuncurrent problem that does not let the plates do their job.

Hi Helen, thanks for your interest and concern in Nellies status. She required more plates yesterday and today again. Reds dropping again, with the whites holding. Dr Morris wants to let her go home for a few days on Monday. Then by Thursday or Friday back in the hospital to start the heavy chemo. Nellie spent time with her daughters today and her youngest grandchildren. Monday the oldest three grandchildren and our great grand baby will be at the house, and spend a few days with us.

Nellie is resigned to the fact that her chances are small, but not giving up hope. I would like her to have these next few days be good ones enjoying her children. Please keep on praying.

Eli