New to Forum: Praying for My Mom Part 1 of 2 (73 years young)

[mymomismyhero]

All,
I came acrossed this site this morning and after reading many threads, I decided to registered for an account. My mom (my hero) is a 2-time breast cancer survivor; right breast 8 years ago and left breast 4 years ago. She had a lumpectomy both times and lymphnodes were removed from her left arm. She underwent chemo/radiation her first time around and only chemo last time. Up until late last summer she generally had a clean bill of health.

Throughout the summer she had been losing weight real fast and was super proud but wasn't trying to lose weight. At the beginning of 2012, she weighed 182 pounds and by the time she ended up in the hospital (2nd time), she weighed only 117 pounds. She had went to her family doctor for a check-up and post-exam, her doctor sent her straight to the hospital for a blood transfusion because she was severely anemic.

During her first two trips they were trying to figure out what was really going on. Anyhow, after her first trip they deduced it to an infection in her esophagus called H-Pylori--I was so relieved that's all it was. However, her blood counts continued to decline and she needed more and more transfusions/platelets. I think it was during her 2nd hospital stay they did the bone marrow test and discovered she had MDS. Which, as you all know is probably attributed to her past chemo/radiation therapy.

She was released from the hospital and referred back to the same cancer center that treated her for the breast cancer. She underwent 4 of 6 rounds of chemo with the drug called Decitabine (Dacogen). Also, she received a shot every week (or other week) called Aranesp. Sometime in October she started getting very tired, short of breath, and bronchitis-like symptoms. She went to her family doctor and was diagnosed with bronchitis. One week later, during her follow-up she was then diagnosed with walking pheumonia.

I knew she was starting to feel really bad because my mom is very energetic, even at age 73. She was starting to stay at home, and stay in bed, more and more. Two days before Thanksgiving she went for another check-up and came home requiring oxygen to breathe. Not the little portable bottles, there wasn't enough output in those to keep her oxygen level above 90. Again, still practically bed ridden.

The Tuesday after Thanksgiving I called the cancer center and said I felt she needed to be seen and she was struggling even with the oxygen. They told me to tell her to go the ER immediately. When I called and told her this, she thanked me because she said I saved her the trouble of making that decision for herself.

After being in the hospital for well over a week, she was being seen by 5 different specialty doctors--but only one visit from her cancer doctor. The pulminary doctor told me that her chest X-ray revealed what could be cancer and that he did not feel comfortable doing a biopsy because of her unstable condition in regard to the lack of oxygen she was getting. I immediately started demanding she be transported to the Cleveland Clinic (CC) but it took me two days to get that far. Why? Because the cancer doctor felt she was fine where she was at and thought she was ready to go home. Really? This comes from the lady who had only been in there one time to check on her. I called doctors after hours only to be blown off. Come the next morning, the pulminary doctor walked in and after I told him the cancer doctor wouldn't sign off on her getting moved, he immediately got the ball rolling. Oh, BTW, she seriously needed a blood transufsion the night before but the cancer center failed to send over the signed order for the transfusion. I called the on-call doctor and all he said was, "she will just have to get it tomorrow.". I was so upset, especially cause he openly admitted she would feel better with the transufsion but there was nothing he could do about it. Thank god there were two nurses on duty that both signed for the order and she got her transfusion within a couple of hours.

I'm sorry this is such a long story. Finally, she gets transported to CC by a mobile intensive care unit ambulance and she was admitted to the Medical Intensive Care Unit. In less than 3 hours, her team of doctors came to the theory that her lung problems were atributed to the chemo durg, Dacogen. There theory was solidified two days later after she underwent a lung biopsy. They immediately put her on Prednisone and took her off almost everything our local hospital had put her on.

She was moved to a regular floor and stayed at CC about another week. Her blood levels started to come up and she was released to go home and follow up with the local cancer doctor. This is when she moved in to my house. She had a home physical therapist and visiting nurse for about two weeks and it took me a whole week after her being home to get the cancer center to order blood work from our house as she was in no shape to travel. It was during the week prior, though, that the cancer center doctor (without any records from CC) was ready to proceed with another type of drug for chemo. It just so happens, however, her numbers were looking so good that they opted to postpone any further treatment.

My mom began to eat again (due to the high dose of Prednisone) and has since put on 13 pounds. Two weeks ago (Saturday) she developed a nose bleed that wouldn't stop so I had to call 911. The local hospital finally got her nose to stop bleeding by packing it with something and injecting the packing with saline. They also gave her platelets that I knew were only at 10 the day before when she went to the cancer center for her blood work. They also gave her fluids via IV because she was dehydrated--I had no idea because she drinks a lot of fluids, especially water.

She was released again so I watched her like a hawk just praying she would be okay until her follow-up appointment with her pulminary doctor from CC on Monday. Sunday morning, she was walking back from the bathroom and became very light headed. I was trying to hold her up, but she was passing out on me and was unresponsive. I, again, called 911. When she got her wits about her again she was mad that I called them. Bless the EMTs because when I tried to cancel the call they insisted on coming anyway to take vitals. She stayed at home and I continued to watch her closely. Her blood pressure had been very low and she finally admitted she had been getting light headed for about 4 days.

Please see next thread for the rest of this story.

Thanks,
Sheri

[mymomismyhero]

I took her for her appointment at CC on Monday and (just like I thought) her doctor admitted her again. This time, they took another marrow sample and discovered that the 4 rounds of chemo (Dacogen that poisened her lungs) did absolutely nothing for the MDS. Mom told the CC doctors what the local cancer center was going to use to begin her chemo again and CC stated her drug of choice was not a good one.

Where we are today: After many transfusions, platelets, poking, prodding, and several different roommates, mom was released to come home this past Tuesday. She left knowing that the CC's next course of action was to institute chemo therapy again utilizing a drug that would offer her a 40-50 percent chance of remission. Granted, this made her hopeful, but I am having a hard time feeling the same due to the low percentage. If this new drug doesn't work, she will enter into a clinical trial program at CC--between the two I am hoping God will see that one of them works!

She is currently at the CC (her brother took her) and I am at work. She had a follow-up with her pulminary doctor and her first appointment at the CC cancer center to outline their course of action.

Although she is breathing a lot better now (only needs 4 liters of oxygen), I doubt her lungs will ever completely heal and she cannot possibly stay on this high dose of Prednisone. They would like to replace it with something else, but the replacement would hinder her blood counts too much. She has dark spots everywhere; her arms, her neck, and her legs and I guess this is due to the low platelets. Her eyes even get blood spots in them. She is very frail and I worry so much with her being home alone when I am at work. My kids, however, get home from school around 3:15 and I must commend them because they help her so much!! They are only 12 and 14 but they are surely learning a whole lot about this situation.

I hope and pray that God will give her doctor's the wisdom they need to heal her. I hope, too, that He will give my mom the strength to endure whatever else is to come during this awful illness.

BTW, I asked as soon as we found out about the MDS if I could be tested for a bone marrow donor only to be disappointed to find out she is too old to receive one!! I was told someone her age would have a 40% mortality rate following this procedure.

Remaining hopeful for my mom: she is my hero and my best friend!

Your comments, thoughts or prayers are welcomed and appreciated!

Sheri
(from Fowler, Ohio)

[LJacobs]

Dear Sheri,

You have certainly come to the right place to share your story and get some support. The folks on these forums have a lot of experience with MDS and will be able to provide you with a good sounding board.

Thanks to your vigilance and care your Mom is being cared for at the CC where she'll get the attention she needs.

Take it a day at a time, and know that it is a long and winding road you are on.

My dad has AML, not MDS, so I am not an expert on MDS.
My dad has been receiving Azacitidine (Vidaza) for the last 18 months and has been getting good results with it. He is not a candidate for chemotherapy and transplant because of his age (79) and because he has a heart condition.

Just with the Vidaza therapy, He has not needed a transfusion for a year.

I hope that your mom gets good results with whatever they try next, and that she finds a good equilibrium.

Take good care of yourself through this upheaval too!
Lesley

[mymomismyhero]

Lesley,
Thank you for the words of encouragement. I am trying to stay positive but it is proving to be very difficult. I lived away from home for about 22 years because I was serving in the military. Thankfully, my mom came to visit me as often as she could and I came home when I could. I finally get out from underneath Uncle Sam's thumb and get to move back home and both my parents' health start to plummet.

It's so hard watching her go through all of this, but I guess I need to find the strength that she has because she is always a trooper. She has expressed her optimism about the new treatment plan that will start as early as next week, but I am scared!! It sounds as if this is her last option and if it doesn't work, she will be left with a CC clinical trial and could get placed in the placebo group.

Wow, I just read over what I've written and I sound very selfish; thinking of how this effects me when I should be thinking about her. It's just that I'm not ready to part with her and I had planned on her being around for a very long time.

All I can do is hope and pray that she responds well to this next type of treatment. Also, I need to find a way to show her how strong I am as we travel this long and winding road ahead.

Again, thanks for your kind words. Glad to hear your dad is responding so well to the treatment. May he continue to do so.

Thanks again,
Sheri

[Neil Cuadra]

Sheri,

How were you able to provide so much detail in your posts above? Are you keeping a notebook or journal?

I think it's a good idea to take notes. My wife and I referred back quite often to the notes we kept on her appointments, test results, medications, and discussions with doctors.

[Al's Wife]

Sheri,

First off let me start by saying, thank you for your Service to our country. Secondly, I am truly sorry that your Mom is going through this. It is truly a roller coaster ride. But you MUST be an advocate for her. Continue reading and learning as much as you can and PLEASE ask questions. Don't just assume the doctors or nurses know what they are doing, because I could write a book about the mistakes, lack of caring, knowledge, etc. we have encountered on this awful journey.
If I were you, I would ask about the drug Amicar (generic Aminocaproic Acid) for your Mom's low platelets. My husband has had virtually 0 platelets (except when he is transfused about once a month) for the last six months, but the Amicar has kept him from having the nosebleeds and other active bleeding that some encounter. It somehow works to help clot the blood.
As you can see from my signature below, my husband unfortunately has progressed to AML after having MDS since May of 2010. We have been to Houston, Bethesda, Tampa, and Atlanta for treatment, and I actually wrote a letter to one of the doctors at the Cleveland Clinic who had agreed to see my husband before he was diagnosed with AML last August.
In this disease (MDS) there are no two patients alike, even if they have the same type. Just learn as much as you can about MDS through this forum, or by reading (but be careful about googling it, because a lot of the info is outdated and the numbers and statistics could freak you out).
But do enjoy each and every day with your Mom while you are learning. Clinicaltrials.gov lists all the clinical trials that are out there for MDS and the locations.
There are so many knowledgeable people on this forum - some patients; some caregivers - that can offer help and support. So you have definitely come to the right place.
Also don't hesitate to get second and third opinions. We have switched local cancer doctors twice since my husband's diagnosis.
God bless you and I hope your Mom gets better.

[katie]

My mom is a two time breast cancer survivor who was diagnosed in September. She has blood transfusions every 18 days. Her platlets have recently dropped along with her white blood cells. She has strange red spots on legs and arms and doctors do not know what they are. I am concerned that they are just letting her go. I want to know how long she has but cannot get any answers. Please respond if you have any knowledge of this. Thanks.

[mymomismyhero]

Neil,
Up until the time my mom was in and out of the hospital, it was her that kept the great notes! I can refer to her spreadsheet right now and tell you what her CBC looked like up until early last fall. She even has a journal stating when she was admitted to the hospital (more than just the first time), what was done, tests that were taken, etc. Since she started her roller coaster of illnesses, however, she has not been able to update her spreadsheet.

Although not exact dates, I know of all the doctors that have examined/seen/given their two cents/offered treatment plans and all the ups and downs she has been through thus far. I mentioned to her that I want to try and update her journal and spreadsheet but we both know at this point it would be a difficult task.

She has undergone so many tests and prescribed so many medications, we are both a little confused. The local hospital prescribed "this", the CC discontinued it, etc., etc.

Anyhow, I am very intune with what is going on with my mom. The only thing I am not intune with is the outcome of this horrible illness.

V/r
Sheri

[mymomismyhero]

Linda,
First, thank you for thanking me for my service, it was actually my pleasure. I do continue to read about the disease but, quite frankly, it scares the crap out of me. I try and portray myself to her as positive, but after reading everything about this disease (especially for someone in her age group), I find it very hard to do.

I continue to read and learn about this disease, but it only hinders my hope. Granted, the CC offers her a 40 to 50% chance of remission with this next treatment, but it is hard for me to jump for joy about! The type/phase of MDS she has is CMML and I see below your husband now has AML. When I try and look up MDS I only become confused as to which type she has an whether or not there is hope.

What is AML? How old is your husband? What have been his symptoms so far?

Praying in Fowler,
Sheri

Originally Posted by Al's Wife

Sheri,

First off let me start by saying, thank you for your Service to our country. Secondly, I am truly sorry that your Mom is going through this. It is truly a roller coaster ride. But you MUST be an advocate for her. Continue reading and learning as much as you can and PLEASE ask questions. Don't just assume the doctors or nurses know what they are doing, because I could write a book about the mistakes, lack of caring, knowledge, etc. we have encountered on this awful journey.
If I were you, I would ask about the drug Amicar (generic Aminocaproic Acid) for your Mom's low platelets. My husband has had virtually 0 platelets (except when he is transfused about once a month) for the last six months, but the Amicar has kept him from having the nosebleeds and other active bleeding that some encounter. It somehow works to help clot the blood.
As you can see from my signature below, my husband unfortunately has progressed to AML after having MDS since May of 2010. We have been to Houston, Bethesda, Tampa, and Atlanta for treatment, and I actually wrote a letter to one of the doctors at the Cleveland Clinic who had agreed to see my husband before he was diagnosed with AML last August.
In this disease (MDS) there are no two patients alike, even if they have the same type. Just learn as much as you can about MDS through this forum, or by reading (but be careful about googling it, because a lot of the info is outdated and the numbers and statistics could freak you out).
But do enjoy each and every day with your Mom while you are learning. Clinicaltrials.gov lists all the clinical trials that are out there for MDS and the locations.
There are so many knowledgeable people on this forum - some patients; some caregivers - that can offer help and support. So you have definitely come to the right place.
Also don't hesitate to get second and third opinions. We have switched local cancer doctors twice since my husband's diagnosis.
God bless you and I hope your Mom gets better.

[Neil Cuadra]

Originally Posted by katie

My mom is a two time breast cancer survivor who was diagnosed in September. She has blood transfusions every 18 days. Her platlets have recently dropped along with her white blood cells. She has strange red spots on legs and arms and doctors do not know what they are. I am concerned that they are just letting her go. I want to know how long she has but cannot get any answers. Please respond if you have any knowledge of this. Thanks.

katie,

It would help to know your mom's age, MDS subtype, and overall health status, i.e., if she has any other major health issues. There are situations where transfusions are the safest treatment and other situations where drug treatments make the most sense. It's the job of the doctors to recommend which is best and explain why to you and your mom.

Red spots could be petechiae, a symptom of low platelets, but the doctors would presumably know that. Is at least one of her doctors an MDS specialist?

The best way to help your mom may be to learn what you can about MDS (pick up the AA&MDSIF free information packet if you don't already have it), make a list of questions to ask her doctors, and make sure you get answers.

[Al's Wife]

Sheri,

My husband started out with MDS but he had a poor prognosis from day one. The bone marrow biopsy showed he had the "bad" kind of cytogenetics (I think that's what it's called) from day one. And after two years of various treatments for MDS, last August the doctor told us that he now had acute myelogenous leukemia (AML) and had "weeks not months." I will NEVER forget that day. So that was why I suggested above that you seek other doctors and opinions if you weren't happy or comfortable with the current doctors.
And while I will be the first to admit that my husband does not have the quality of life he would like to have, we have had some wonderful times together during the past six months. And I will never quit hoping for a miracle. I thank God for each and every day.
There are so many stories on this forum of faith and hope, and there are some heartbreaking ones too. We (this forum family) have lost two members recently and it always hurts and hits close to home. But so many on here have supported me during the rough times of my husband's illness.
My husband was only given a 2-3% chance that this last chemo would work, but he opted to go for it. We figure 2 or 3% is better than 0%.
No one can tell you how long. Only God knows that. And even though the doctors try to give their opinion based on statistics and textbooks of how long a person has, this is a disease of one, as someone said, as every patient is different.
I am posting a link one of our relatives sent of 20/20 (Robin Roberts journey). And even though, like my husband (75 years old), your Mother is not a candidate for transplant, it shows Robin's experience with MDS. It takes a few seconds for it to go from one segment to the next, so don't click off thinking it's over. It goes through her whole ordeal and was very inspiring.
http://abcnews.go.com/2020
I hope you will take the time to go through other people's previous posts as so many people have explained things far better than I can.
You asked about my husband's symptoms. Mostly just tired - very, very tired. His RBC's are never over 9.5 (with transfusion), he has petichiae (little red spots) all over his legs from lack of platelets as well as bruising all up and down his arms. He is often light-headed and sometimes confused if his blood counts get too low. He is transfused about once a month and we get his labs checked weekly.
We spend a lot of time at doctors and hospital getting blood and we have a "new norm" but, hey, it's better than the alternative.
God bless you and your Mom and family. We are praying for all of you.

[katie]

Hi Neil,

My mom has rcmd. She is 78 going on 79. We feel frustration because they do not seem to be offering any otheroptions. Transfusions are all she is getting. Iron is 4500 but will not do iron chelation do to infections. She did not do well on procrit so they are not doing much more. We feel like she has weeks. They spots are unknown. She had been on prednisone for sepsis pennulicitia in her ARM but they will not put her on it again because of infections. They say the red spots are not petechia but they do not know what they are. Thanks for any and all replies.

Katie

[Neil Cuadra]

Katie,

If you don't feel able to get more information from your mom's doctors then that's one of the reasons you might want to seek a second opinion. Have you been to the University of Massachusetts Medical Center? They have doctors with MDS expertise. If your mom can travel to Boston then there are doctors with MDS expertise at Tufts and at Brigham and Women's Hospital.

[Hopeful]

Hi Sheri,

Here is an article from the Cleveland Clinic that summaries the different chronic leukemias and their current treatments. It points out the CMML used to be classified as a type of MDS but now is seen as more MDS-MPD:

http://www.clevelandclinicmeded.com/...nic-leukemias/

This article doesn't provide answers but may help provide some clarity on your CC doctors' approaches. Keep the faith!

[mymomismyhero]

Linda,
My mom has the bruising all up and down her arms, too. The ones on her neck are starting to fade, but others are popping up on her thighs. Just about an hour ago I approached her to offer her something to eat and about jumped out of my skin. I could not see her right eyeball; in fact, it looked black. I took a closer look and discovered it was completely covered in a very dark red blood. I had her close her left eye and tell me how many fingers I was holding up; she passed that test so at least I know she can see. Weird, though, her left eye was blood shot in the corner for the past couple days (as it has been before) but it was a bright red (normal blood shot look) and it completely faded away this morning.

I took her blood pressure and it's very low; 87/55. I offered to check her sugar but she refused because she didn't want to get upset. Her sugar is only wacky right now because she is on 50mg of Prednisone a day. Hard to control her food in take (and types) when this medication makes her hungry as a horse and very shaky for about an hour after she takes it.

Also, toward the end of this week her oxygen level was great and she had been feeling better. In fact, on Friday on the way home from the CC she actually didn't use her oxygen for 2 hours and her oxygen reading was above 90 during that time. Things like this always get me so excited until she declines in another area. She's been running a slight temperature the last couple of days and she had me bump her oxygen up this morning from 5 liters to 6 liters.

We are going to the family doctor tomorrow and she is suppose to go to the cancer center, too, to get her blood work done. I'm going to ask her family doctor to do her labs so I don't have to haul her all over the place. She is in no shape to go here, there, and everywhere! I have a feeling she will be getting platelets and/or a transfusion tomorrow, though.

When she is doing good, I feel okay about going to work. But, when she's like this I don't like to leave her alone. I am off Sat-Mon each week because I work 10 hour shifts which, at least, gives me another day at home to be with her. When I am at work, I do have an uncle that comes and checks on her and gets her lunch about noon. Other than that, I have her carry her cell phone with her whenever she gets off the couch to go to the bathroom or something. I worry so much everyday whether I am here with her or not. As I mentioned in my initial post, she's already had a nose bleed that wouldn't quit and she gets light-headed spells, too.

It sounds like you and your husband have had a rough time and have traveled a rocky road. He is very lucky to have you as you seem so very supportive and completely intune to all of his medical care. I will pray that this next treatment works for him.

Thank you for responding back, I appreciate it so much. I think corresponding with people that can relate to all of this is very helpful. It's hard to explain any of this to people here locally because they are unfamiliar with the disease and I don't think they really know how serious the situation is.

Again, thank you!

Sheri

[Al's Wife]

Do ask the doctor about Amicar because it
may help the eyes and any active
bleeding. My husband takes 4 a day.
Prayers to all of you.
Linda