Does anyone else get all these complications?

[DianeB]

Hi all. I haven’t posted in along time. I’m trying to let go and just live this, plus my dad gets upset when he knows that I’ve been researching.Now things have turned really bad or so it seems to me. Does anyone else get transfuions every other day or at least twice a week. He was diagnosed over a year ago and had good and bad days. He was in and out of hospital with different things from infection when his whites were low, but now they’re high and when they find a drug that brings down the whites it brings down the platelets also. He’s had vidazia, dacogen hydrea and glevek. Then hydrea and gleveck together. Now it’s just hydrea twice a day and he’s getting blood usually once or twice a week and platelets probably twice a week. It just seems things have really turned for the worst. Used to be he’d have complications but he’d come out of it and have a couple good months until the next infection but now he’s bed ridden and has lost 50 pounds. I just feel like crying all the time but try to be strong to help my mom. She takes him to the hospital 3 times a week for cbc and also on tuesdays to see the doctor. Right now dad’s foot is sore and black and blue and he has a hematoma on his back that makes him very uncomfortable (doc thinks from physical therapy from trying to get some muscles back, but just told him to discontinue it) and on the days when he needs blood and platelets it takes 5-6 hours to get both. But with all of this dad still knows what’s going on and still has a sense of humor. I just wonder how much more his body can take. He doesn’t really have an appetite though he does think that the cannabis in pill form called marinol does help. He just started taking that a couple weeks ago. I know I should keep hope but it’s so hard seeing him go through this. He is bed ridden because he has no strength, but for now can get to the car using a walker. Then I wonder what hapens when he can’t get to the hospital to get transfusions, does anyone know if they can do that at home? He did have someone coming to the house drawing the blood for the cbc but the counts weren’t getting done quick enough to get the platelets or blood from the blood bank on the same day. I know mom feels better taking him to the hospital for them also because the nurses can seehow he looks. Through all this and his whites being at 90 at one point it has still not progressd to leukemia acording to the last bmb,which was around 2 months ago. His counts yesterday were whites 40 rbc 8.2 and plt were 13. I guess again I’m just talking here but also wondering if anybody has ever gone through all of this and still made a comback, he always has before but now it just doesn’t seem like it will happen.

[Mary4Mike]

Diane,

I don’t have any medical answers for you, but DON’T GIVE UP!!!!! It doesn’t sound as if your parents have given up hope. It is surprising what the human body can tolerate and still keep going……the survival instinct is very strong.

You and your family are in our prayers and if you believe, your faith will give you strength and peace.

[kami]

Diane,

My dad had all these complications 4 years ago when he first got diagnosed with MDS. Vidaza put everything in check for about a 1 year…and then he got even stronger with revlimid for over a year and half.(and he’s not 5q-.)It’s just matter of finding the right drug that is a match for his body and his cytogenetics. It’s been said over and over on THIS site especially that these drugs affect everyone differently.

From what you say, your father seems strong. So you be strong; take Mary’s advice…DO NOT GIVE UP….EVER! For his sake. Unexpected things happen with this disease,a lot of times for the good.

Hang in there!

[jaxem]

Diane
What you state is a mirror image of what my wife is going through. She’s lost about 1/3 of her body weight in the 2 2/3rds yeras she’s been fighting this disease. Don’t get hung up that leukemia is any different than mds because of marrow blasts. this is serious stuff. my wife & I just returned from Minnesota after trying to get a haplo transplant & was turned down because of her fragility. After a week or so at home, she picked up an infection and she’s back in the hospital on IV antibiotics. She’s also on hydrea (2x/day) but that takes her counts down especially platelets & whites and is what probably caused her picking up the infection. Seems like you’re always trying to battle the disease (hydrea) which lowers counts which causes infections which causes the docs to remove the hydrea which causes the blasts to go up which causes hydrea to be added, ad infinitum. As counts become lower, you need to get blood products at usually every other day for platelets and every 2 weeks for hemoglobin. I’m surprised at him getting gleevek for raeb. did he have at least 4 rounds of vidaza or dacogen w/o interference from hydrea?

[lindajo]

How is your Dad doing? One of the best things you can do for him and with him is to encourage the sense of humor. Laughter helps the body to fight the disease and actually can help the healing process.

Tell him jokes watch a funny movie together. Research the healing properties of laughter.

Everyone will go through a very difficult time with these illnesses. Sometimes they come out of them and sometimes they don’t but you can help them enjoy the journey no matter what.

[DianeB]

Sorry haven’t got back. Thank you all for the support. It’s hard not to give up hope when I see him suffering so much. He still is alert as ever and is determined that he is going to get out of bed and walk again, but first he needs to eat. The doctor’s office called yesterday and want him to discontinue the hydrea to see if the platelets come up. They wee 12 yesterday.It sounds like a cycle is about to begin. Off the hydrea, platelets go up, whites go up. The gleveck didn’t help either. It seems the drug that he was on last when he didn’t look as bad and lose all the weight was Dacogen, but he only had one rd and his whites climbed to 90. He goes to the doctor on Tuesday. Wish the could find the magic formula! He’s to the point where mom is giving him showers and he is eating his meals in bed most of the time. Talking about mom and her being there with him 24/7 is a whole other post. I’ve been trying to stay with him once a week so she can get a break. Then the whole thing starts about everybody not being able to take off work, like I can. Doesn’t bother me, other siblings can help out in some other way. They’re very stubborn, and try not to depend on us kids. Mom says she may need us to help more but for now they are fine. This makes me mad because as she knows, things could change in a second and now has been the time all along. Parents….gotta love ’em.

[DianeB]

Dad’s whites were climbing, that’s when they put him on hydrea. Now the platelets go down along with the whites. When his whites were really low he was in hospital constantly for infections.I know the mds is serious stuff, but when I asked the doctor about what happens when it turns to leukemia what is the difference, I understood his answer as that then using a more agressive chemo would have to be used and with the mds it would be harder on him. Did I misunderstand this, is the chemo he’s using now any less agressive than what they would use if it does go into leukemia? He goes to the doctor this coming Tuesday, if anybody has suggestions of things I may want to ask please clue me in. When we go to the doctor the doctor just seems totally frustrated as what to try next. Last visit I asked him about merinol (pill form of thc) which he had no problem with butI really don’t see where it is making dad have a better appetite. Doctor did say it would have a sedating effect and I’m wondering if this is effecting counts any. Has anybody had any experience with it, and feel that it helped. Right now all he does is sleep.

[jaxem]

Diane
There’s really no difference between mds & leukemia, just the blast amount. I disagree with your doc that more aggressive chemo needs to be used when blasts go up, just need to find the right chemo that will knock the blasts down. Marinol, or however it is spelled, never worked for my wife but everyone is different. My wife sleeps a lot too. The disease just drains you. My wife started on a new pill drug called targretin which tends to target the disease & not the good cells. We’ll see how it works.

[Lydia]

Know what you’re going through. Mom’s been in the hospital for 2 weeks now. Has had 7 units during that time. On oxygen with mask, then just with nose piece. Her one kidney has failed, the other one holding. Kidney doc said she has 3-6 months. But today they said kidney is holding – so YES – DON’T GIVE UP! Now she has contacted “VDE” (?) – in the process of looking it up. It’s a “antibiotic resistance” infection. She says it’s just one thing after the other. Doesn’t feel much like eating either – just skin and bones. So very hard to see her like this.

We take turns sitting with her. She said she “wonders how long it will take” (for the end to come). Shit.

Yes, a sense of humor helps (us too). She said she’s not ready to go yet since she just remodeled her kitchen last year and got air conditioning! She says it’s just one thing after the other.

Told us today about her kidney holding. Is this good or bad news? We don’t want to lose her, but it’s so awful to see her like this. Guess it will be up to her. She’s alive, but not living as they say. Now I know what it means.

Back to looking up VDE. Everyone hang in there! Thoughts and prayers with you all . . .

[Kensyen]

Diane

Reading this forum has brought back all the memories of my father and his fight with MDS. Towards the end of his life he was receiving up to 8 transfusions per day, I scoured the internet for hours looking for a solution, I became hypnotised with his platlet counts, his neurophil counts etc..My father was my hero, I was so close to him, thoughout his illness I was his advocate, I spent hundreds of hours trying to get Revlimid into Canada, I advocated to Celgene and became acquainted with its Vice President. At the end of my fathers life I knew I had done everything possible, but even at the end we were injecting Neuprogen to bring up is Neurtrophil count. What I appreciated about my fathers death is that he did not lose control of his mind, he was coherent until he fell into a deep sleep and passed away 3 hours later. I remember his long sleeps and his fight to want to stay awake.
I sincerely wish you all the best,

Wendy

[DianeB]

I hope my dad passes the same way Wendy.He also is coherent but sleeps a lot. At this point he is just taking pain pills and sleeping.He is home now but He is supposed to go to the doctor today, I think he just wants to thank him and tell him good bye. I Asked one of the nurses yesterday at the cancer treatment center how long a body can live without platelets, she said no one can tell me the answer I’m looking for. Thank you all.

[Kensyen]

Diane

When my father was at that stage I spent countless hours talking to specialists at Princess Margaret and Sunnybrook Hospitals in Toronto. I wanted an answer that I wanted to hear. My father came home from the hospital and was sitting at the dining table eating dinner, he was happy, talkative and watching television, that was Dec 23rd, the next day it was like a total turnaround, the night of Dec 24th he was taken back to hospital and then put on comfort measures on Dec 25th. I brought him home by private ambulance on the night of Dec 25th, he passed away the next morning. He was in pain and being given a light dosage of moriphine. I believe the pain was caused by the total collapse of his bone marrow production. His final death occured fast, it was not prolonged and it was dignified.
I wish you the best and truly feel that when your father passes it will be the same. At least this disease allows one that. When my Uncle passed of cancer that eventually affected his brain, he was not allowed that dignity, he was in/out consciousness and it was prolonged. I found with the bone marrow collapsing things progressed quickly. Within a week my father went from having less than 5% Blasts to having more than 80%. He was put on Chemo, but I was told by a very well respected specialist in Toronto that the Chemo at that stage may only prolong life by a week and the quality of life would be significantly diminished.
Best Wishes,
Wendy

[jaxem]

Diane
I don’t know why somebody couldn’t tell you a better story about platelets. Hemophylliacs don’t make platelets & they live ok. platelets provide clotting factor. vidaza lowers counts! he needs to visit the clinic twice/week for blood checks & products, especially platelets which die off quickly. what I hear is a lot of people giving up. no need for him to hear that. As I’m writing this, I’m in the hospital with my wife, the umteenth time, where she’s fighting off an infection & getting herself in condition for a haplo transplant. She is constantly sleeping due to her low counts. she’s so weak she needs a bedpan & urinary catheter for relief. She’s fighting this ugly disease rather than going home to die.

[DianeB]

Hi Jack, thanks for all the info. Dad’s platelet transfusions werem’t working anymore. He did go to the clinic three times a week for counts, and usually got platelets at least two times a week. They gave him some and the counts went down instead of up. He was on vidazia earlier this year. The problem as you know too is finding that drug that works,his whites were off the chart…literally and blasts were 74 in the peripheral blood. I thank you for all your info and your wife is in my prayers. Dad has chose to have hospice come in, he was willing to keep fighting I think but his body isn’t. Hurts too much, and just wants to be out of pain.

[3kids1dog]

My prayers are with you and your family.

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