Father's platelet count

[Kathryn]

Hey eveyone,

I just wanted to see if you guys could give me a better idea of what is going on w/ my father. I feel very uneasy right now.

The spots from his platelet count being low have been increasing; he even had blood blisters inside his mouth. His nose (etc.?) has been bleeding as well. He thankfully went to the doctor today to check his count and they had dropped to 8,000 from 12,000 on Monday. He had a transfusion today. Also the spot where they did an IV 2-3 weeks ago still hasn’t healed. My stepmother mentioned also that he was responding slower – maybe due to concern of what was is going on. He tends to internalize. Unfortunately the only info. we get is either from her or my father, so if they don’t ask, we won’t know. He was supposed to start his second round of Vidaza on Monday, but they want to wait until the platelets either start to rebuild or show signs of rebuilding.

Is the Vidaza even working? Why are his counts going down? He was just starting to talk to us again and now a second round. Will he be able to handle it? I really would like to know what stage he is in, I have a feeling, but my stepmother doesn’t care to know, so she doesn’t ask….. I am really worried and would just like to know what is going on…… and what can I expect.

Thanks everyone, your support means so much.

Kathryn

[Kathy G]

Kathryn-
My Dad’s platelets dropped a lot while on Vidaza and he needed a couple of platelet transfusions. He has the mouth sores (blood blisters) still does – spits blood a lot which really bothers him. He also had the nose bleeds. He had a BMB today and we won’t know anything from that until next week. He did 4 rounds of Vidaza and was pretty weak after each one and his numbers dropped a lot. Now his numbers seem to be coming up a bit (he did have a blood transfusion 2 weeks ago which has helped). His platelets were 114 today, and Hmg was 11.4 – best numbers he’s had in awhile. His white count is up and we think he has a throat infection they did a culture.
Hang in there – I know it is so tough – up and down.

Kathy

[JulieMarie]

Kathryn

My mom was on Vidaza since Jan ’05 She noticed more sores in and around her mouth and there’s this over counter lip balm stuff that she now uses on a daily basis and it has helped with the sores not coming. (I forget the exact name of it but I think it starts with a “H” and can be found by the blistex) My mom’s counts went low every round and each round she got a little weaker. This past round is the first time that she actually had 2 weeks off of work doctor’s orders, but other rounds she still managed to work 30 to 40 hours. Mom needed a tx of rbc after one of the rounds (1st or 2nd) Now plates are unstable one cbc they are low the next the are high, who knows where they will be today with this cbc. As for the nose sores I had those a while back when the air was dry and there was bacetrican (spelling?) an over counter drug that the pharmacy suggested which did heal the sores up with time

[Neil]

As a rule counts (particularly platelets) will decline before they go up when on Vidaza.
Remember only 18% of those on Vidaza respond.
TX may be necessary till counts begin to climb.
Always a good idea to be working with docs who have considerable experience with Vidaza, particularly those who were conducting trials when it was known as 5-Azacytidine.

[Terri]

Our Doctors Office has several patients on the Vidaza. One Gentlemen still needs to get tx at least once a month. Everyone reacts differently.
Bob doesn’t need TX but without the vidaza it seems the wbc get out of hand and so do the blast. the Vidaza keeps them in line. They are staying as stable as can be, THe Plts I doubt will ever be normal he gets sores too even when not on the Vidaza. We found a Mouth rinse that really helps think it is called rincinol prn

Here is Some info on It. it works for Bob.

NEW soothing oral pain reliever provides fast canker and mouth sore relief and promotes healing

Easy-to-use rinse

No more messy, painful gels

Simply swish for 60 seconds for up to 6 hours of pain relief

Finds the sore for you, no need to touch the painful area

Forms an invisible, protective coating which blocks irritants to promote healing

Pain free oral pain reliever
No benzocaine. No hydrogen peroxide. No alcohol.

Which means no numbing stinging or burning!

Aloe Vera extract helps soothe, hydrate and heal.

Clinically Proven!
Dentist and Pharmacist recommended for pain caused by:
Canker sores
Denture Irritation
Oral Surgery
Mouth Sores
Abrasion from Braces

Safe for adults and children, even if accidentally swallowed.

AVAILABLE IN 4 oz. BOTTLE AND CONVENIENT ON-THE-GO PACKS!

For immediate relief, Rincinol is available at: Walgreens, CVS, Rite-Aid, Eckerd, Longs, Brooks Pharmacy, Bartell Drugs, Discount Drug Mart, Stop & Shop, Raley’s, Meijer, Albertsons, Jewel-Osco Osco Drug, Savon, ACME, drugstore.com and other fine stores nationwide.

Rinse Away Canker Sore Pain with Rincinol P.R.N!

[Kathryn]

Hey you guys, thanks.

I saw my father today and he was on his way to his gen. doctor. This is rare because he won’t go to the doc. unless he feels that it is critical or he has to. My brother had come to town from North Carolina to see him, so you can see how urgent he felt it was. His legs are extremely weak and he fell last night. Apparently he has a big spot/bruise on his back. His heart may be bothing him as well… that could be due to anxiety though. His arms were covered in spots.

His hemo. doc. is supposedly very involved w/ trials and was planning on putting my father on another drug that will be available in June.

Kat.

[sarah]

Kathryn, will keep your dad in our thoughts and prayers. Hope those counts come up soon. What part of NC is your brother from? I too am from NC. My husband also experiences the blood blisters in mouth. He actually gets relief at night by wearing a mouth piece. The type you boil in water first and bite down on to get impression of teeth. Seems to help him.
Take care,
Sarah

[Kathryn]

Also, apparently he was bleeding last night…. bad enough to change mattress pads, sheets, etc..

If you can, please give me more info. regarding this or tell me where I can go to get more info….

Thanks,

Kat.

[sarah]

Kat, where is the bleeding coming from?

[Kathryn]

Sarah, my bro. is actually from Savannah, but has a house in Andrews. It is so beautiful up there!

As for the bleeding, I am not sure where it is coming from. We didn’t even know he had fallen until my stepmother told my brother on the phone from the doc.’s office.

Thanks so much for your prayers.

Kathryn

[Kathryn]

Hey again… Just thought I would let you all know that he came home from the doctor’s office w/, from what my dad says, exercises to strengthen his legs and the advice “to hang in there”… My dad seemed disappointed. I don’t think we have all of the details of why he actually went though. I didn’t mention his fall, but I am wondering if they even addressed it or the bruising.

What are the warning signs of someone bleeding internally? What are the chances of bleeding internally when one falls w/ very low platelets?

Kathryn

[Suzanne]

Sounds to me like this is something he should notify his hemo or the Dr in charge of giving him the vidaza about right away. A reg Dr can’t deal with MDS and if there is enough blood to change sheets etc it has to be more then a few sores in his mouth.
Also sounds like someone needs to attend Dr appointments with him to be sure all problems are addressed.Once I started dealing with people at Hopkins addressing my MDS, I rarely saw my regular physician and only when they told me it was something to be addressed that way. My daughter went along,took notes, and asked questions at all appointments except those that were routine- just blood counts checked or tx’s.

[B. Greene]

I would second Suzanne someone needs to understand what the whole picture is and would think it would have to be the Dr. doing the V. Your doctor can give you a rx that will ease the sores, it is a rinse like Terri spoke of. But, you also need to be on an antiviral med which will keep them from forming. Alcyclovir. Is there any way you can talk to the dr. yourself?

[Kathryn]

Hey, you know, this is very frustrating, so I am going to vent.

We (my sister & I) are unable to be directly involved w/ my father’s care. My stepmother feels that we think that they are/she is uncapable of handling this when we try. I would imagine that it would be different if she were my mother(she passed away when I was 16). We aren’t even able to speak w/ the doctors unless, for some rare instance, we are at the appointment. I am thinking that they went to the internist because of money. My sister saw my father yesterday and even though he had a tx. on Friday he was so weak he couldn’t go down the stairs for fear he wouldn’t be able to get back up and his coloring was off. I was wondering if they even mentioned the fact that he fell and the possiblity of him bleeding internally. He couldn’t get back up and had to crawl to get to something he could pull himself up on. He has had insomnia also and instead of doing what the nurse suggested (the prescription or benedryl), they were going to buy an off brand of some kind of nightime tylenol. My stepmother asked the eye doctor about whether or not some nutritional pills were ok for him to take instead of asking his hemo.. Also the doctor was going to start the second round of Vidaza today, which would be a week early. She wasn’t even going to question it… thankfully, my father feels the other way. He is in no hurry to start it until he feels better. He is the only one at that office to be on Vidaza, so a bit of me feels like he is a guinea pig. He goes to the hemotologist today for a check up, so we will see.
I suppose what I will have to do, if this continues, is call the nurse on the sly. She is not supposed to talk to me, but I can talk to her!I really am concerned that money and convenience is going to interfere w/ my father’s care. I will see what plays out today…. I am hoping that I am wrong….

Also, to let you know how off things are at this time, my stepmother is determined to sell their house. My dad has lived there for 37 years and did, at one time, want to sell it. But now that he is so sick, he told my sister that it would devastate him. It is very stressful. He does not want to move right now. It was exhausting for him to just go through some books that he had collected. Lateley my step. has kicked it into high gear since the contract is up at the end of May. I am hoping God will see my father’s suffering and let him stay in his home. Once he gets through his treatments and is feeling better, then they can relist it…

Well, sorry for the vent & thanks for listening… I don’t know what I would do w/out you guys.

Best wishes and hugs to you all,

Kathryn

[Terri]

Hi Kathryn, I can’t imagine how frustrated you are to be so far away. I also agree with Suzanne above, someone needs to direct the questions to the Hemotologist. There was an article on the front page of this website not the forum the actual site that had a list of questions for a patient to ask the doctor it was written quite well. I wish It was there when Bob was first Diagnosed.
Maybe you can send your Step Mom a Little gift. I keep a journal for Bob, with his weekly counts etc, appts, meds he on and I jot down questions when I think of them to ask the doctor on the next visit.
If I see a day where Bob is extremely fatiqued I write it down with the date. Any little thing, if he feels nauseated, runny nose, nose bleeds etc. This way also when the Doctor ask I can refer back and tell him how he is doing.
Maybe your StepMom can keep one for your dad.
You don’t know how many times I go back a year or more back to see how he is reacting to the Vidza I check his counts from the same time last year.

Just a thought.
Best wishes to you and your family. Sorry for rambling, I guess I am feeling your frustrations.

[Author]

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