New to your group
July 6, 2005 at 11:42 am #7369
Be careful what you do on this in the meantime kind of treatment. Trying some treatments can disqualify you for trials that might have better odds of helping-that is one reason for the wait and see approach. No matter what you take you have to have at least a 30 day dry out period in between. Waitning and watching is no necessarily a bad thing-especially if the quality of life is good while you wait.July 6, 2005 at 10:28 pm #7370kristykMember
You have the voice of reason. It is hard to wait but sound advise. My Mom has been healthy since time of diagnosis, symptoms free (other than tired) until last few weeks. She has had two episodes of fever in past 3 weeks. Now she thinks she might have bladder infection. As she was truly not sick a day in her like until this, I’m afraid this is the disease finally showing itself..I wonder, will this become normal ( frequent infections)? KristyJuly 7, 2005 at 3:39 am #7371
Not necessarily. Some people have more trouble then others. I had a mild bladder and yeast type infection early on and had not had anything like that for years. Then a couple of times I had a temp where they never found anything and decided it was a reaction to meds or transfusions.But i went in in the middle of the night when my temp went over the limit they had set and they kept me for a day or two until they were sure I was Ok. I did not take any extreme precautions. The best advice I ever got from my Dr. was to live in the present and enjoy it as much as I could. The only other infections I had were ones almost everyone got who goes through chemo that takes the counts all the way to nothing. Everything was taken care of pretty quickly and I have found that at least where I am treated they pretty much know what might cause a problem and are watching for those things. I did monitor myself and report anything that was the least bit unusual immediately. I still do.July 7, 2005 at 3:39 am #7372RelaxsonMember
Suzanne. Great advice! It is very hard to wait for sound advice but usually that is the best thing! Its amazing that we can love a doctor and trust everything they say and do until they say..”sorry we just have to sit back and wait and see” all of a sudden we start to question his ability. Can’t they just fix everything! Remind me of this great advice if I start to complain about the waiting game
Kristy, My parents have not went to MD Anderson as of yet. They have had excellent treatment from a doctor in Round Rock and haven’t felt the need. However, my father is grasping at all avenues at this point. I will have to share Suzanne’s words of wisdon with him and maybe he can sit tight for a bit longer.
Best to all
karaJuly 7, 2005 at 4:13 am #7373
Hi everyone, I’m new here, and hope I’m at the right place. My Dad has a very long history with AML, and we are feeling very discouraged at the moment. You can see the whole history here:
I was introduced to your board by someone at the abovementioned site, and the drug Vidaza looks very very interesting.
Right now though, I’m interested in anything that can:
1) help my dad get over his current hardships (see above post) including seeds, pineapples (someone please explain this to me by the way), so that after this, he can try this new Vidaza drug.
2) Give us and him hope!!
Help me keep my hopes up please. Thanks.July 7, 2005 at 4:50 am #7374kristykMember
I saw your post on the other board. I dabble on both. There are quite a few people on this forum that have been using Vidaza and who have been quite informative. I’m sure you will get some good suggestions. Some other drugs in the loop right now..Revlimid, Decitibine, Zarnesta, Exjade. You might look into these as I believe they are lower toxicity treatments that are proving successful for MDS and AML pts, especially older patients. I am new to all of this and still getting informed myself. So all I can offer you and your dad is support and words of enouragement. I can tell you that in reading your dad’s history, you have given me some hope. 16 years ago diagnosed AML with lots of good remission time..that is inspiring without a doubt and a success story. I am so sorry that he is having trouble again, but it appears that treatments have advanced signifcantly since then, particularly with these new meds that are not so hard on the system. Trick is getting into a study. But Vidaza is approved and available. Keep up hope. I hope he regains his strength soon. KristyJuly 7, 2005 at 6:04 am #7375
KristyK, thanks for naming those other drugs. I’ll look into them, and I am happy that his experience with AML is an inspiration to you, and hopefully others here.
My dad is only 59 now, so you can get a feel for how young he was when first diagnosed with AML. His long history with the illness is for us, bitter-sweet.
The bitter part is obvious – the dreaded AML came back 10 years after the BMT! We didn’t see that one coming at all, and it was just as big a blow to him then as was his first diagnosis…. perhaps bigger, as he assumed then, that there would have been nothing that could have been done to save him.
The sweet part of it is – he had a wonderful, happy, 10 year ride, free of AML, post BMT. He has been blessed with a family that loves him, and over the years, a caring and supportive medical team.
Now, however, we have another challenge on our hands, and, although I will admit, he has bounced back from challenges in the past, we are very concerned about the recent turn that his body has taken post-Mylotarg. I fear that if he gets over this current hurdle, we will only have one shot to try something new.
Therefore, I’m searching the ‘net’ in an attempt to find something that can give us some hope of buying him several more years on this earth, while having those additional years be as comfortable for him as possible.
He’s tired of being sick, tired of the tubes and the medication, and the fevers and the vomitting, and the hospital room… everything; and we are emotionally drained as well.
I suppose what I’m really saying is that I know that not only am I hoping that the information I can get here, along with the words I can get will be comforting to me, but also that all of it will help him to find the strength to get through this. Hope is such an important thing in this fight… without it, we give up.July 8, 2005 at 2:24 am #7376
Today wasn’t all that bad. He has been able to keep down most of what he ate today, and is feeling a little stronger than yesterday… only a little.
The abdominal bloating seems to be caused by gas – the doctors did a check (a rather painful rectal exam) to see if they could find any stool or bleeding, and them seem to have found nothing of major concern.
Has anyone here experienced abdominal bloating post Mylotarg? The doctors have not prescribed anything for gas, and we don’t want to give him any over-the-counter drugs like Gas-X for instance, because we don’t want to create a problem.
Other than that, he is still weak, still on oxygen (I saw somewhere that Neupogen, which he gets daily can cause respiratory distress… could that be the reason for his need for oxygen? Note: his lungs are clear, and were scanned last week).
Overall, today wasn’t that bad. We’re hoping that he will continue to make these baby steps.July 9, 2005 at 6:31 am #7377Sandy LMember
I am new to this group. I have been following the AML list for over a year now but never posted. My husband Mike was dx 3/04 with MDS – RAEB. We went to Tampa and we were told that when his red blod cells drop significantly we should contact them for a possible clinical trial. Until then just monitor the changes. The platelets are dropping. He had a bad cold/flu /temp and since then the counts are going lower every other week. The doctor mentioned Vidaza, We are reading up on this drug and do not know if this is the right time to enter into Chemo with no other symtoms. Has anyone else had to make that decision and what guidelines did you use to help you decide?
Thanking you in advance for your help.
Best regards,July 9, 2005 at 3:39 pm #7378
Sandy, I don’t think anyone can answer that for you. You have to do what you and your doctors think is best. If anyone knew the right drug to take and when there would not be decisions to make. I personally did wnatever they recommended with them knowing that I wanted to keep my quality of life as long as possible so I was concerned about side effects. The list you read on any of the drugs always sound terrible. One of the things they told me was that if it was too hard I could always stop. Has he had a BMB recently? What blast level is he dealing with? With RAEB they were always as much or more concerned about my blast level as they were my counts.July 11, 2005 at 6:57 am #7379Sandy LMember
Thank you for the reply. He has not had another BMB and is not looking forward to another one so soon. We go to the doctor in two weeks and they will probably suggest that. How often is the BMB done? For some reason I think we are not using the right doctor. When we go to him this time, I will ask the hard questions that we have been avoiding bringing up.
We did go to Moffit in Tampa but the doctor told us not to contact them unitl the red count went down. We are also not covered at that hospital so if we go back there again we have to foot the bill. Mike was laid off and we were on Cobra when he found out the he had MDS. It has been impossible to get the insurance we need but we are still working on it and we are hopeful.
I am having trouble using this site. I do hope that you get this message, and that I am posting to the site.July 12, 2005 at 9:09 pm #7380
Dad released from hospital today!! 😀
Still not out of the woods, but blasts down to 13 from 29 in the past week or so, post Mylotarg treatment. We are hoping to see them go down <5%.July 12, 2005 at 9:29 pm #7381shirlsgirlMember
That’s great news!! It will be nice for him to be able to sleep in his own bed and relax at home. Hoping for a continued drop in blasts.
JodyJuly 13, 2005 at 8:39 pm #7382RelaxsonMember
Hi Everyone.. My dad just got back from the doctor. His formal diagnosis is myeloproliferative II non-specefic His white blood cell count has almost doubled. 23,000 to 40,000 this week. The doctor is going to try the vidaza again fo a week and see if it will slow the cells if it does they will continue if not they will look into the hard stuff. Does anyone know of any other trials that are going on in the texas area? San Antonio or Houston?July 14, 2005 at 2:07 am #7383
MD Anderson in Texas is known for research and has lots of trials. Maybe also a good place for a 2nd opinion. Maybe others here will know more about the diagnosis you mentioned. I am not familiar with that one.
Register for an account, or login to post to our message boards. Click here.
- You must be logged in to reply to this topic.