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Need leukemia help asap

anneinco
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anneinco

anneinco

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Is there anyone who has knowledge of cancer centers that deal with late stage AML? Family member was diagnosed with 'pre-leukemia' in October and this week the doctor stopped all chemo and said it was now full blown leukemia and there was nothing they can do. They are working on getting an appointment with City of Hope for a second opinion.

 

Prognosis without treatment is not good, based on research and verification from leukemia and lymphoma society. Due to age, bone marrow transplant is not an option.

 

She is running a fever tonight and I am started to really freak out. Tylenol brought it down to just under 100. Doctor told her if it continues that she be sent to the hospital.

 

Need options to present. Thank you. Internet access is sketchy since I am in a hotel now visiting dh's family, and depending on how things look tomorrow with the fever, I might be high tailing it back home. I just wanted to mention that in case I do not reply right away or often.

 

Update. 3/11. 11am Sitting in the airport in Denver and got a text from my sister that they may be taking her to the hospital. Rally frustrating that I can not get there.... Call just came in that they have an ambulance on the way. She has been nauseous so she has not been eating. She was up all night. She will be in ICU.

**********

3/14... I don't know what to think. We are still in the hospital. She was not put in ICU. Induction chemo (which is the next step) would be too much for her. She has pneumonia, and we are seeing her WBC count coming down from the time she was admitted. She is not eating aside from lemon Italian ice the hospital has. We are going to try some high calorie/high protein juice.

 

Yesterday we thought things were better and today I am really worried. One of her drs (internalist) who has been in today said she is not happy with the way her lungs sound. Yesterday, shethought they sounded better. We are still waiting for her oncologist to stop in today.

 

We have second guessed decisions we have made. We had her brother come up Monday evening to visit after visiting hrs. Earlier that evening after rounds her oncologist said it could be a matter of days, possibly that night. My dad is concerned that she may think we are giving up on her. We aren't, we need her to beat this pneumonia.

 

Yesterday was nice, she sounded better, and talked more. Today, is a bit worse but she was also woken up so much last night that she got very little sleep.

 

Please keep the prayers and good thoughts coming.

 

Anne

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olan719

olan719

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I don't have much advice to offer, but what about one of the large, reputable cancer centers like MD Anderson? I live in the south, so lots of people here travel to Texas for their expertise and then work their plan with doctors/treatments in their home state. My father did this many years ago, as well as one of my best friend's mother. I hope you can get some answers soon. :grouphug:

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anneinco

anneinco

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I don't have much advice to offer, but what about one of the large, reputable cancer centers like MD Anderson? I live in the south, so lots of people here travel to Texas for their expertise and then work their plan with doctors/treatments in their home state. My father did this many years ago, as well as one of my best friend's mother. I hope you can get some answers soon. :grouphug:

 

I have this posted on another forum too and MD Anderson is one that came up. I sent the info to my dad. told his to present it to the doctor at the appointment today.

 

He did not argue with me when I said in am flying home tomorrow instead of Tuesday. It is my mom btw. She has been through breast cancer twice and now this. We need a break.

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JudoMom

JudoMom

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I have this posted on another forum too and MD Anderson is one that came up. I sent the info to my dad. told his to present it to the doctor at the appointment today.

 

He did not argue with me when I said in am flying home tomorrow instead of Tuesday. It is my mom btw. She has been through breast cancer twice and now this. We need a break.

 

:grouphug::grouphug::grouphug:

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Rose in BC

Rose in BC

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:grouphug:My dad died of AML 15 years ago. He was 69 so too old for a bone marrow transplant. He did have two rounds of chemo (which involved three months in isolation in the cancer clinic). Then he came home and lived 5 months cancer free. After the cancer returned he lived another two months. Again, that was 15 years ago so I'm guessing treatment has changed.

 

He was treated in the cancer clinic in Vancouver, BC. We were very pleased with that hospital.

 

I will say we really enjoyed the time we had with him during the five months he was cancer free. He was relatively healthy during that time.

 

Please feel free to ask me any questions if you have any. I know how tough it is to watch someone go through this illness. :grouphug:

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olan719

olan719

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Well, that hospital/cancer center is one of the best in the US, maybe the best. After I posted, I checked out their website, and it looks like there is a lot of information on there about making a first appointment and/or getting a referral. You might check it out if you want to "do something" in the meantime. I'm thinking of your family, and I'm sorry you are having to deal with this again. I hope you can get some help and a break very soon. More :grouphug:

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Scarymelon

Scarymelon

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If you are in the PNW, the Seattle Cancer Care Alliance; which includes Fred Hutchinson and the UW. It is also a top tier Cancer Center. If you have a fever with AML, you need to be in a hospital. Most larger hospitals have oncologists on call 24/7 and you can probably get what you need by going to the E.R. of a larger hospital, if getting to Seattle is not a possibility.

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LizzyBee

LizzyBee

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One of the premier CML specialists in the world is at OHSU (Oregon Health Science University). I'd speculate that they are probably a top notch hospital for AML as well. Other places that come to mind are the Cleveland Clinic, Mayo Clinic, and U of Michigan.

 

If you haven't asked on the LLS (Leukemia and Lymphoma Society) message boards, I'd post over there.

http://community.lls.org/community/bloodcancer/livingwith/aml

 

At this link, you can download the latest NCCN guidelines for the treatment of AML. Scroll down a bit, click acute myeloid leukemia, then the red pdf box. You will be prompted to log in or register, which is a pain, but the NCCN guidelines are very informative. Anyone who contributed can be considered an AML specialist (although some will have specialties within AML), so that might help you decide on a doctor and facility. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp Margaret O'Donnell at City of Hope is one of the contributors.

 

You can call the LLS on Monday and ask to speak with someone about your mother's treatment. I believe they can put you in touch with a specialist who can answer some questions for you. I haven't done that myself, but others on the LLS boards have mentioned it. There is also lots of accurate information on the website. Website is http://www.lls.org.

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Ali in OR

Ali in OR

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I have a sister with AML as well as a member of our church family. The member of our church is being treated up at OHSU in Portland, and based on what I've learned through my sister's experience, it sounds like they are proactive and know what they are doing, if that's anywhere near where you are.

 

Some things don't sound quite right for an AML diagnosis. There isn't really a "pre-leukemia" state. The Acute part of the name (the A in AML) means it comes on pretty fast and pretty serious. The initial treatment is a month in the hospital for induction chemo. If she was diagnosed with AML in October, she should have been hospitalized immediately for chemo. There isn't much of an option as death will come pretty quickly if you don't. I also haven't heard the phrase "late stage" with AML, because it all happens pretty quickly. Within the AML diagnosis there are different subtypes and the prognosis can vary depending on which type you have. Even if you go into remission with the induction chemo (and remission is pretty likely), the cancer is likely to return with many subtypes. My sister's did, so the next step was a bone marrow transplant (actually a stem cell transplant) which she had last summer and she is still in remission. Our friend from church will be going immediately to the transplant step after the consolidation chemo (which follows induction chemo.) His cancer is likely to come back otherwise.

 

Without chemo, there isn't a lot of time left with AML. I would try to talk more with her doctor to better understand what is going on and if she is receiving any treatment for the cancer. I'm sorry.:grouphug:

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anneinco

anneinco

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I am taking it that you are not close with the family member (as in going to doctors appt and stuff). They may not be sharing all the details and have decided to live what life is left to the fullest they can. Make as many memories as you can.

 

 

I mean that with no disrespect, just looking at from another angle.

 

Non taken... That is a possibility. As far as I can tell she has been pretty straightforward with what she knows. However, she does not seem to ask questions. She does not know the medical part of everything, just goes with what they want her to do.

 

For instance.. When they said they were changing chemo and why, she cut them off mid explanation and said she was not really listening, they could tell her more tomorrow. I have talked to her face to face and I am pretty sure she is not hiding anything. Maybe my dad knows more.

 

According to my cousin, my mom does not even know what type of cancer it is. I am making an educated guess and the woman I spoke to at LLS came to the same conclusion since "preleukemia" (myelodysplastic syndromes MDS) transforms into AML in 1/3 of patients.

 

I hope I am wrong and I get good news tomorrow. I don't think I will. My dad confided in me today that he was really concerned my sister (who they told last night) did not realize how serious this was. I could not bring to tell him what I knew, and he did not tell me but it was almost like we were skirting around the truth. I find out tomorrow. I did tell him that I had talk to my sister last night and that she knew.

 

I have scanned the replies, and I am going to try to cut and paste for the plane ride so I can retread them and take notes. I fly out early (even earlier since we 'spring forward' tonight). My dad has asked for contact info for MD Anderson and I am also going to get him the info for centers in the PNW. That would be ideal since that is where I am. They have an appointment with City of Hope this coming week.

 

The time frame is really scaring me because I know she needs to get into treatment before yesterday. I am assuming they are basing this diagnosis on her bone marrow biopsy in Feb, unless it can be done by blood test and if so that was more recent.

 

Thank you for all the replies and I will keep updating as we learn more. Going to try to get some sleep right now, did not get much last night.

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TGHEALTHYMOM

TGHEALTHYMOM

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:grouphug::grouphug::grouphug:

 

I am praying for you, your mom, dad and entire family. I hope she has comfort soon, and stays away from any Emergency Room ( they are so full of germs!!!)

 

My dear dad had CLL and passed away in December 2010. I hated to see him suffer so much, and he did get MDL about 6 years ago, the chemotherapy caused it, and his oncologist called us all in for his last days... his insurance ran out and he went to a VA Hospital in Illinois. He was treated so well there, and every time he had a fever he had to go be admitted. We are grateful for his strength in weakness and he fought so hard the whole time. In good times he came to visit us, even when our children could not touch him or wrestle at all. He went down fast in his last month. And refused to call HOSPICE for almost a full year until he fell, and was in so much pain, he had to go to the local hospital. Then got home and needed pain med to breath, so HOSPICE came and helped my mom so much.

 

He also developed prostate cancer and had surgery to implant beads with female hormones to slow it down.... diverticulitis and had alot of his intestines removed, and skin cancer on his nose he had to have removed.

 

 

 

We miss him so much, and feel your pain. It is hard to be strong and to let go. I feel like we were on a roller coaster for almost 8 years and then it just halted.

 

I pray that your whole family will be supportive of her and each other through all of this. :grouphug:

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Rose in BC

Rose in BC

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Is there anyone who has knowledge of cancer centers that deal with late stage AML? Family member was diagnosed with 'pre-leukemia' in October and this week the doctor stopped all chemo and said it was now full blown leukemia and there was nothing they can do. They are working on getting an appointment with City of Hope for a second opinion.

 

Prognosis without treatment is not good, based on research and verification from leukemia and lymphoma society. Due to age, bone marrow transplant is not an option.

 

She is running a fever tonight and I am started to really freak out. Tylenol brought it down to just under 100. Doctor told her if it continues that she be sent to the hospital.

 

Need options to present. Thank you. Internet access is sketchy since I am in a hotel now visiting dh's family, and depending on how things look tomorrow with the fever, I might be high tailing it back home. I just wanted to mention that in case I do not reply right away or often.

 

Update. 3/11. 11am Sitting in the airport in Denver and got a text from my sister that they may be taking her to the hospital. Rally frustrating that I can not get there.... Call just came in that they have an ambulance on the way. She has been nauseous so she has not been eating. She was up all night. She will be in ICU.

 

Anne

 

:grouphug: Praying for you.:grouphug:

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LizzyBee

LizzyBee

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Update. 3/11. 11am Sitting in the airport in Denver and got a text from my sister that they may be taking her to the hospital. Rally frustrating that I can not get there.... Call just came in that they have an ambulance on the way. She has been nauseous so she has not been eating. She was up all night. She will be in ICU.

 

Anne

 

:grouphug: :grouphug: I can't any words that are sufficient, so I'm just offering virtual hugs.

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Miss Innocent

Miss Innocent

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I'm so sorry to hear about your mother. We lost our oldest boy to AML on Easter Sunday last year, 9 months after his diagnosis. I don't really understand why the doctors don't think it is treatable. Maybe there are crossed wires somewhere?

 

I'm sorry your mum is in ICU now. I spent a night in PICU with William after his leukaemia relapsed. Thankfully chemo was able to bring his white count (of about 500) down to a safe level and he was able to continue with treatment. Unfortunately the doctors were never able to get him back into remission in order to do a BMT.

 

Anyway, I don't think I can give any advice as the health care systems are so different in our countries and there are lots of variables involved with AML (my son's was particularly aggressive). I just wanted to say that others have walked this path and to express my sympathy to you and your family.

 

Lots of love, Emma xxx

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LizzyBee

LizzyBee

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I'm so sorry to hear about your mother. We lost our oldest boy to AML on Easter Sunday last year, 9 months after his diagnosis. I don't really understand why the doctors don't think it is treatable. Maybe there are crossed wires somewhere?

 

 

I'm so sorry for your loss. :grouphug:

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  • 2 weeks later...
anneinco

anneinco

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We are still fighting. The doctors are starting to say that we are fighting a loosing battle. They attempted to stop an antibiotic a couple days ago and within 24 Hours she spiked a fever of 104. No clue if they were connected but She is back on the antibiotic. And her temp has stablaized. This makes almost 14 days of round the clock antibiotics. The infectious disease dr says they do not like patients on the antibiotics more than 11-12 days at a time.

 

We did get my mom's personality back toward the end of the first week (today starts week three). When she was admitted she was in a depression that was lasting from her last hospital stay in Feb. We got her feistiness back and that is making it more difficult now to watch her go downhill. Even with her weak now, she is still glaring at the respiratory staff when they come to do her treatments and joking with the nurses. We had none of that the first few days she was in. She also started eating again, which she was not really doing much of the month or so before now.

 

The hospitals general dr today said to pretty much start treating for comfort not to fight the battle, but I told her that as long as my mom wants to fight, we will let her. She still says she is going to Vegas with her bowling team in June so I want her to believe she has that chance. No chance of chemo until the pneumonia is under control. Her WBC count is back up again too even with her on all those antibiotics.

 

I was at the hospital 25 hrs starting Sat at noon and came home Sunday afternoon to sleep a little. Going back ina couple hours to go take over for my dad since I know he will not sleep there, and as long as my mom is sleeping I will sleep a little. Better than nothing. My sister is sick and feeling hopeless but at least I know my daughter is with her for now and is taken care of so I do not need to worry.

 

I do not know if I am more scared of something happening on my shift or not being there and something happening on my dads watch.... I am going back in with my dad saying she is pretty much like she was when I left, except she is having more trouble breathing, however she does not want the 'dark vadar' mask yet... As she calls it.

 

I hate cancer....

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  • 3 weeks later...
anneinco

anneinco

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Last update...

 

My mom passed away yesterday morning. Thankfully, my sister, who had the night shift, was able to call home and my dad and I were able to get down to the hospital for the last four hours. She had been unresponsive for almost 12 hours and one of her last actions before she slipped into what was most likely a coma was to look over and see her favorite CNA from her month long stay standing at the room window waving at her. She gave a big smile and then went back to sleep.

 

We had another of her favorite staff, a respiratory therapist tell my sister, that mom was one of the most amazing patients he has dealt with. After almost five weeks in the hospital, not able to get out of bed, she was still there smiling and joking around as much as she could. He says he rarely sees that after a stay that long.

 

She is one of the strongest women I know. Mom fought and beat breast cancer twice, she was fighting through MDS and AML, and was trying her hardest to get through this bought of pneumonia. She was determined to get home, unwilling to give up. However, her body had just been through too much :(

 

Thank you for all the thoughts and prayers during this time. I had shared them with my family and we were all grateful.

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