I live in California and I have a 49 year old sister in Lima, Peru that was diagnosed with AML like 1 1/2 month ago. I run into this forum and I was hoping somebody would give me some thoughts to try to help/guide her.
After being diagnosed with AML she was hospitalized and her first round of chemo started days after. I was able to go to Lima, Peru as soon as she told me the terrible news. When I got there I went to see her in the hospital only to find her cornered in an alley on a gurney stacked with other patients at the Hospital's emergency section, she had to wait for 2 days till they found her a bed in a room. She was lucky that they found a room where she would be alone since most patients are in rooms with 3 other people.
My sister has never been a believer of chemotherapy so she didn't want to receive treatment at first, but after some convincing on my part and on the doctors she decided to give chemotherapy a try. Unfortunately, even though there are a couple good doctors at the hospital the whole system is bad, from the person that does the biopsy -- it seems like they put the recent graduated doctors to do it so that they can practice -- to the lack of written information as far as what medicine or procedure was given.
She supposedly got the usual protocol, 7 + 3, which I understand to be 7 days of cytarabine and 3 days of anthracycline, I am not sure they gave anthracycline to her. Her first chemo lasted 7 days and then she stayed at the hospital for 3 weeks after that. The 3rd week post chemo was the worst, since she had developed an infection on her right arm where they had inserted a catheter and in spite of antibiotics it wasn't going away, so they started treatment with Amphotericin for 7 days. However, after day one she was all red and had develop some serious rashes throughout her body, they discontinue the treatment but at this point my sister was feeling horribly since it was really hard for her to take any more medicine or blood since her veins were very irritated. Then on top of that the Hematologists came with bad news that the chemo didn't work, and that a second round of chemo would most likely not work either, they also told her that the bruises that she had when she was admitted to the hospital were due because the leukemia was already infiltrated in her skin. She stayed 4 more days at the hospital and her reaction luckily went away and she gained more strength. The hematologist suggested a second round of chemotherapy to wipe completely her bone marrow (without a transplant) to see if she could achieve remission but my sister had already decided that she was not getting more chemotherapy and enjoy whatever time she had at home.
She was released from the hospital like a week ago, she goes to hospital for platelets and blood and to get checked for infections and this coming tuesday she finally has an appointment with a hematologist. To the date we still don't know the cytogenetics of her AML M2.
I have tried looking into clinical studies that may apply for her here in the USA but they all require insurance and since the peruvian national insurance that she is part of doesn't participate on treatment abroad this doesn't seems viable option.
I hope somebody in this forum can provide me with some guidance given our circumstances, I would greatly appreciate it.
I know nothing about Peru's health system but it sounds pretty inadequate for the volume of people who need help. Your sister's lucky she didn't get major infection in the corridor.
However, it sounds as if your sister is getting the same treatment there that she would here. There are a variety of drugs that can be the 3 in the 7+3 but it is usually given in a 30 minute push by the nurse. Your sister should remember that and that would help figure whether they gave her the drug or not. Of course, memory can be a little fuzzy with the meds we have to take to get well.
If the bruises stuck around, they might be sarcoma but if they went away, they were probably petichiae, which are little bruises caused by the lack of platelets. This is important because sarcoma is a different game altogether. I didn't have it so I'll leave it to someone who did to go into that.
I don't have any real ideas here. In your place, I would like to get her to someplace like the Hutch or MDA to assess her candidacy for transplant. However, if she had no response to chemo, there's probably very little they can do.
It would help a lot if you could tell us what her blasts were before chemo and after. You also don't mention her age or blood counts. While we're not doctors, we have enough experience from talking with one another we might be able to share some insights with that information.
So sorry that you had to find us, but be assured that we are here to help in any way that we can. Also, please understand that none of us are MDs, and we can only "talk" from personal experience and researches. It's also hard to give advice when neither we - nor you - have the full, medical information.
Here are some thoughts at random: 1) bruising is a sign of low platelets. Platelets are elements in the blood that help blood to clot. A bruise is a sign of bleeding under the skin, and in people who do not have a blood disease this happens when you bump into something hard wherreas people with low platelets can get bruising spontaneously. Another sign of low platelets are petichiae - those look like a lot of small red dots (sort of like a rash) under the skin.
2) They told me I hadn't responded to chemo either - but about a month after finishing chemo my counts went up, and now I have been told that I DID respond. The determination of degree of responsiveness is made by a bone marrow biopsy. Someone on this Board has written to me that her husband, who was treated at a major cancer center, did not have a post-chemo bone marrow biopsy (BMB) for 5 weeks after chemo ended. So the follow-up policies can vary from place to place, and different people seem to respond differently.
3) You can read up on the various types of AML on the Leukemia & Lymphoma website. That will help you to understand the issues better. The specific type of AML depends on where in the production of myeloid cells the process has gone awry.
4) I don't know how the Peruvian medical system works, but I would suggest doing some research into where they have the most experience treating cancer and, more specifically, leukemias. There can be a vast difference in level of expertise from one hospital to the next. I can't help you there, as I don't speak/read/write Spanish. Your sister may need to be seeing other doctors.
5) I'm sorry your sister had so many problems with infection from the central line they put in and from the antibiotic they used. Clearly she had an allergic reaction as well.
6) The most frequent cytogenics for AML M2 is t(8;21) which is usually consistent with a favorable prognosis. Frequently it responds to standard induction and consolidation. You need to find out what your sister's cytogenics are, and you need to find an MD who will be able to help your sister.
7) Your sister won't be able to enjoy much if she doesn't treat her cancer. Chemo is really the only option. Of course there are now a variety of drugs and regimens out there besides "standard" chemo. Yes, it does make you feel horrible: my description of myself when my counts were at their lowest was: "brainless, wet dish rag". And I had only minimal, adverse side-effects (very mild mucositis). I am also older than your sister, so they are less likely to treat me with high-dose chemo.
Please do keep writing in. Oh - also you need to know what your sister's blood counts are. The most important ones are her hemoglobin (Hgb), platelets (plts), white cells (WBCs), and ANC (absolute neutrophil count - that's neutrophils plus bands and is expressed as a percentage of WBCs). Neutrophils are the blood element that helps fight infection.
Dear Tex and Karen,
Thank you for taking the time to answer to my post. Your answers were very elaborated and have given me some further understanding about AML.
I was finally given a copy of some documents that the hospital gave to my sister, they are results from a blood test from last week since she is going to receive platelets and blood transfusion this week. Her counts are as follow:
Platelet count 31
Leucocites 2.45 - Normal reference (5.00-10.00)
This exam doesn't mention neutrophil counts, hopefully she gets it on tuesday when she meets her hematologist.
Tex: My sister is 49, and her bruises went away. She received multiple platelets transfusions and blood as well. When she was originally admitted to the hospital she had these big bruises on her legs and they did biopsies on that and that is when the doctors told her 3 weeks later that the result of the biopsy had shown that she had 'infiltration' in the skin, implying that her leukemia was very aggressive.
Karen: when you mention that there is a variety of drugs and regimens out there besides 'standard' chemo, can you send me some information? Did you refer to clinical studies? Targeted radiolabeled antibodies?
Once again thanks for your responses.
That still doesn't match up in my mind about her "infiltration." Of course, I certainly don't know everything and I'm constantly amazed at the depth of my ignorance. At any rate, if it's gone it's gone and, hopefully, nothing to worry about anymore.
The counts you have look pretty good. Nothing's terribly low and nothing seems to have run amok. Of course, the white count (WBC) and the absolute neutrophils (ANC or NEUT) along with the blast count are the most significant counts.
I wish I could give you better ideas but this is a resourceful group. Maybe someone will come up with a really great idea.
If I were in your shoes I'd contact local cancer treatment centers and see if your sister can get free care there. Is your sister an American citizen? If so she may be in better shoes than if she wasn't. I believe that the Dana-Farber Cancer Institute in Boston MA is the best treatment center in the world. The doctors there treat their patients at nearby hospitals such as Brigham an Women's Hospital (BWH) which is right across the street from Dana Farber. There is also Mass General. Both are wonderful hospitals. And I know from experience that the Leukemia Social Worker at Dana-Farber is the niceset lady I've ever met in my entire life. She's wonderful and she might be of great help. Her name is Mary Lou!
Is there any chance your sister could be treated in Boston? BWH is a teaching affiliate of Harvard Medical School. The doctors are top notch!
Hi Tex! It's great to see that you're still here. Hi everyone! I'm back! I've been gone for a while because my problem with chronic pain has really fried my nerves and destroyed a portion of my life. But tomorrow I start new pain and I have great hopes that it will work and I'l then be able to move on with my life. So I thought I'd get a head start and start posting here again.
Thanks for your post. Unfortunately my sister is not a US citizen or US resident, I sponsored her 2 years ago but it takes around 10 years to process a brother to sister application. Thanks for the lead on Dana-Farber, I am looking into some of their clinical trials and see if they could apply to her.
There is a clinical trial search page on the L&L website. You enter appropriate data, and it comes up with trials all over the country. Of course they all involve chemo of one sort or another
What you really need to do is get all your sister's lab results and the slides from her pre-chemo and post-chemo bone marrow biopsies. You need complete medical info for your sister: any co-morbidities, past medical history - especially any blood workup that was done as part of a regular physical in the year or so prior to the AML diagnosis (it helps them to see when it started). When I went for my consult at Sloan Kettering I wrote up a little history of how I was diagnosed - in ny case although I had felt extremely fatigued for a couple of months, the precipitating event that made me start to realize that something was really wrong was getting flu (and yes, it really WAS flu) over New Year's 2010-2011. I wrote up all signircant past medical history, listed all meds taken, family medical history, etc. Then you should go and get a consult at an NCI hospital in your area with their leukemia specialist. Every person is different, and even little differences can make a huge difference in how the disease should be treated. If you can get hold of the slides, that will help them to look at the specific cytogenics and other elements they might want to examine.
Once you've done that, you can see about bringing your sister to the US for treatment - or the MD up here may be able to talk to MDs in Peru. Medical care in the US is prohibitively expensive unless you have really good insurance or are extremely wealthy. However, the MD up here may have suggestions for treatment(s) that could be undertaken in Peru.
I just did a brief Google search, and came up with the info that MD Anderson is now affiliated with the National Cancer Institute of Peru. You might try doing some more searches to see what else you can find. Also - does the NCI of Peru have specific hospital affiliations? If so, that's where your sister should go at least for a consult.
I hope that this helps.