Hona -- please give us an update on your mom. We are praying for her and expecting that things will come out fine. Hope that you had the best Thanksgiving that you could under the circumstances. Thanks for keeping us updated -- dave

Dear Dave and everyone,

Happy thanksgiving to all of you, may you celebrate many others together with your loved ones.
My mum is doing well so far. She finished on Sunday with a very intensive chemo (10 times stronger than the first one) and until now she has absolutely no side effect. Thanks GOD for this. Hopefully, this is not a bad sign for the effect of the therapy.

On the other side, today I feel extremely sad and worried. My brother met the doctor today, and unlike the previous time, he doesn't seem to reflect much optimism about the outcome of the second round. I know that it is to early to make predictions now, but where did all that optimism from one week ago disappear! I simply can not understand these doctors!!! We called him again, and asked him if anything seems to be going wrong these days, but no, he said everything is as anticipated.

I pray to GOD every minute, hoping that my mum, and all of you out there will get over this ordeal.
Looking forward to your support-Hona

Hona:

I am overjoyed that everything seems to be going well with you mother. As I stated before, my doctors were quite pessimistic as well. My first oncologist (onc) essentiall said there was no hope since MDS is incurable and it was causing the AML. My second onc said that my only chance was to get into intensitve chemo, but still did not provide for much more than a glimmer of hope. My feeling on this is that they do not want to give you confidence and then have it dashed. They would rather you prepare for the worst and that not happen. I think this is understandable from their point of view, but it tends to be a bit counterproductive as far as keeping the patients and their caretakers positive. As contrasted with that, a good number of people on this list are actually survivors, and we are saying essentially ... if we did it so can she. Since I think most of us believe that the attitude of the patient and their caregivers is as important as the treatment, we tend to be as optimistic as we can be. Reality is somewhere in between. However we have lost comparitively few that we know about on this list. I do not want to cite percentages because as Cliff has pointed out, its not like rolling dice -- every person is different. My advice to you would be to be as positive as you can with your mom -- talk about what you are going to do when she is cured, and don't even mention the possibility of falling out of remission. Keep her positive and fighting -- she has plenty do deal with without worrying about a downturn.

I know that this might not relieve your fears, but sometimes when we instill hope in others it tends to do the same thing for ourselves. Being positive is good therapy regardless.

Take care and know we are praying for you and your mother -- dave

Hona,

There is little that I can add that Dave has not already said. As a physician who has practiced for 30 years and who has now seen my share of physicians, I know as well as you do that there are just some doctors who "hang the crepe" when there is still hope. I don't know why they act like that, because I have seen miraculous about-faces in patients, who go from Death's door and out the Hospital's door. Your mom is tough and she fortunately has not had bad side effects. And NO, Hona, not having side effects does not mean that the treatment is not being effective. As I have mentioned many times on these posts, I have never ONCE vomited through two inductions, a consolidation, and conditioning with radiation for transplant. NOT ONCE. I had been warned that I would be doing that constantly by a guy I know who is a 14 year survivor of AML. Just keep a positive outlook. The ultimate outcome is unknown, but right now, I advise just going with the flow. It will decrease your anxiety and make you a much better influence on your mother's will to keep fighting.

Will be praying for both of you.

Cliff

Hi, I am new to this group. I'll start by sharing my story. My father in law (age 74) was diagnosed with AML in August. He started out with secondary (treatment related) MDS, which was diagnosed in May of this year. He currently has fungal pneumonia in both lungs and a fungal sinus infection. I have been helping to take care of him at home. I administer AmbiSome intravenously each day to treat his fungal infections. I have been doing this daily over the course of the past six weeks. At this point, the antifungal medicine has not seemed to make much of a difference. His sinus infection actually has gotten worse each week for the past few weeks. He was hospitalized late Saturday night due to high fever, which he has spiked each night since Wednesday. The fever does not last too long but obviously something is causing him to become fevered each night.
I am very close to my father in law and spend quite a bit of time with him each day (6 hours due to medicine). I am having a hard time because I see him having more bad days than good lately. It's very difficult to watch someone that you love slowly decline. His appetite has really decreased, he has become extremely weak and he always seems so tired. I'm worried that he doesn't have that much time left with us. I suspect that his pneumonia has gotten worse. He had a CT Scan and chest xray done today but has not received the results yet.
I pray each night that he makes it through the holidays with us but I feel as though I need to prepare for the worse. How long can an AML patient with fungal pneumonia survive? What should I be prepared for? How will this progress? My husband and mother in law are not dealing with this very well and hold onto the hope that he will get better. I just feel like I need to try to prepare for what is come.
Sorry for such a long post and thanks for letting me vent.

Hona,

It is possible that the doctor was just tired or stressed. Sometimes, especially in the case of cancer, they try not to sound too optimistic because things may not go well. When your get you Mom's bone marrow biopsy and see that she is in remission-this will be a real cause for optimism. This is the only thing that matters. The way her doctor talks doesn't matter at all. Because she responded quite well to the first round I think she will get into remission.

Hi ltw and welcome to the forum.

You didn't say anything about your father in law's treatment and if he was able to achieve remission. Can you tell us more about this? How is his blood work right now? I assume he is not in remission and his immunity is very low. In general, fungal infection in an elderly patient with AML doesn't have a good prognosis. It is great that you spend so much time with your father in law and try to help him as much as you can. Try to make him as comfortable as possible. Is he in any pain? Let us know more about his condition.

ITW,
As Trish said, fungal infections are difficult to eradicate in someone with depressed immunity, especially infections that have been ongoing for a while and are pretty established. I had a fungal pneumonia during my first induction, but was successfully treated with antifungals. I don't know why your father-in-law's therapy has been maintained with Amphotericin B (although it is a powerful antifungal), when it has not been effective. There are newer and different antifungals. I am not an expert in antifungals, but if there is, indeed, no demonstrable improvement in your father-in-law, I would sit down with his doctor and ask about additional or replacement treatments. Also, perhaps an ENT physician has some ideas about the sinuses. There might be medications that can be used for sinus irrigation etc. I will stop here, because I am beyond my area of expertise. Please keep us informed.

BTW, it is wonderful to see a daughter-in-law act this way to a father-in-law.

Cliff

Cliff,

I was also wondering about Amphotericin B continued for so long without much proof of effectiveness. It is not a harmless drug and can cause major issues on top of his other problems.

ITW -- welcome to this thread of the forum, and we will do all that we can to help. It is always best to prepare for the worst, but hold onto faith -- most of us here were not given much hope at one time or another ... but we are all still here. Cliff is an MD and while it might be out of his area, he can help advise on what questions to ask. So please provide as much background info as you can, such as how many rounds of chemo he has been through. I suspect he got the infection when he was quite vulnerable from the chemo, and they are probably hold off on giving any more chemo until he recovers more. If his blasts are increasing and he cannot have chemo, there is an alternative treatment thread on this forum that has had success with patients that cannot stand any more chemo. If you cannot find it, please let us know -- it is called "Alternative Treaments." We are all praying for you, and I just want to say that there has to be a special place in heaven for people like you. You are an angel already. Speaking as one who has been where he is, I know he is so thankful for your loving care. -- dave

ITW,

I ditto what Dave said to you. The type of Amphotericin B that your father is getting is not really a problem for him, because it is packaged inside a lipid membrane that keeps it from being nephrotoxic. The thing is that he is not getting better. I would advise pushing for an infectious disease doctor to decide on a regimen that might be more effective. Please broach this with your doctor and let me know what happens. Your dad has one great daughter.

Cliff

Hi, sorry it has taken me so long to respond. My father in law is taking 10 mg of Revlamid orally each day. His blasts have been fluctuating between 12 and 17, unless he is dealing with a new infection. He was hospitalized last Sunday and was told that he now has bacterial pneumonia along with the fungal pneumonia that he has been fighting for several months. His blasts last Sunday when he was admitted to the hospital were 35, then back down to 15 when he was released on Friday. I am really getting concerned at how fast his health is failing. He has really went down hill since Thanksgiving. He is sleeping a lot more, eating less and just not feeling good in general. It is hearbreaking to watch him go through this.
He has seen an infectious disease doctor, who has added the antibiotic Invanz to his daily medications. He is receiving platelets and blood every 2-3 days. Last week he needed 2 units of platelets every other day. He doesn't seem to have any pain other than some discomfort in his chest when breathing from the pneumonia. If he is in any other pain, he is not saying. He is a very strong man that rarely complains. The ENT doctor said that the only way to clear the impacted sinuses was through a medical procedure, however, the risk of him bleeding out due to low platelet count ruled out this possibility. His oncologist at Johns Hopkins did tell us that it could take several months to see any improvement from the AmbiSome. We have an appointment tomorrow morning at Hopkins with his oncologist. Praying for some good news.

I forgot to add....his doctors at Hopkins have told him that remission is not a possibility. They will continue to treat him as long as they can, but they will not be able to reach remission. He was not a candidate for a BMT due to the fungal infections. They have also told him that there is a good possibility that they will not be able to clear up the fungal pneumonia. Been doing lots of praying and holding onto hope......

ITW -- we are praying for your father-in-law and your entire family. I feel like he could not be in better medical hands. I know everyone here is pulling for him and praying. -- dave

Hello Everyone,

I am new to the forum. My Dad was just diagnosed with AML at 68. It has been great to see the positive stories and attitudes on this website. He is a very healthy and active "elderly person". (I hate how they characterize over 60 as elderly.). He has no comorbidities and a performance status of zero. I am curious to know about anyone's experience with BMT/SCT at 65+. Thank you in advance! Happy and healthy wishes to all of you!