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Peaches
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Posted: Thu Nov 20th, 2008 01:05 am |
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My sister died of Mutilple Myeloma 2 years ago in June. She had been doctoring for extreme pain in her back for over a year (seeing her doctor once a week). He gave her pain pills, morphine patches and anti depression meds. Her illness was not discovered until my daughter took her to the emergency room with unbearable pain (while she was on morphine patches, pain pills etc.). She was med flighted to UW hospital where they were waiting with an IV to give her Chemo. She almost died from the Chemo, but did make it home. She then was given an experimental drug ($5000.00 a pill) to hold the cancer at bay while she regained enough strength to get more Chemo. Side affects of this drug are sores in the mouth and kidney faliure, so drinking lots of lots of fluid are a must. She got the sores in her mouth and would not drink her water. I do not understand why she wasn't put on IV's to keep her hydrated. I took her to UW for an appoingment where where I tried telling them her kidneys were failing, but they said the tests were OK. Her legs were swollen, she was very disorented, talking to my mother who had died, etc. I put her to bed that night and 5:00 the next morning UW called to tell us to get her to the hospital "her kidneys were failing". She died 3 days later. My opinion is she never had a chance and they didn't tell us that.
Her doctor told us they caught it early, but I think she had it for a long time and he was covering himself for not checking into the cause of her pain. I am sooooo angry at her doctor and have lost all trust in doctors.I guess I woudl feel better if he would just tell us he messed up, that her learned from this and it will never happen again. I asked at UW what stage she was in, they told me the 3rd stage, but that is not what her family doctor told us. When I think of the pain and agony she went through, all of us trusted her doctor and ingnored her when she complained of pain.
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DougC
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Posted: Wed Dec 24th, 2008 02:49 am |
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| I've spoken with other patients who were misdiagnosed for years until their kidneys were involved. It wasn't until then myeloma was diagnosed. Thankfully they found experts who specialize in treating myeloma and they're on track with proper treatment...I hope and pray they all recover and live long lives...I hope we all do. I think myeloma is still misunderstood by many. I'm sorry to hear about your lose. I hope you can find peace
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Peaches
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Posted: Wed Dec 24th, 2008 03:10 am |
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Thank You! Since I posted that letter, we have learned that my sister's best friend has also been diagnosed with it. The positive side of this is her doctors have caught it early, she is doing as well as can be expected. Should have had a bone marrow transplant very recently but will be in the hopital until sometime in January. I pray for her every night. She is very fortunate that she had a good doctor.
I am a little confused as I thought this was a rather rare disease. Since my sisters death I have learned of 3 other people that I know personally that have it. My opinion is that's not RARE!
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DougC
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Posted: Wed Dec 24th, 2008 10:01 pm |
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The incidents of MM do seem to be rising. I know as I look around the clinic I too come to the conclusion it is not as rare as in the past and the age of dx is coming down some. I still hear from many however that they were misdiagnosed for some time before correctly being diagnosed....that's sad
Sorry to hear of yet another another in your inner circle battling this beast. I hope the outcome is better this time. Seeing a specialist is key when possible.
Bestest to you
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destiny
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Posted: Tue Apr 28th, 2009 11:12 pm |
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I have found that those of us who get myeloma all say the same thing..I never heard of this disease or cancer but i have also learned that until you get something you may hear it on the news etc but pay no attention because at the time it doesnt affect you or anyone you know then once you get it you see and hear it everywhere.
Peter boyle the actor
michael crichton etc....its not that we dont care its just until we hear or are affected we just didnt realize how much it is out there.
des
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dpcaregiver
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Posted: Wed Apr 29th, 2009 12:55 am |
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Peaches,
I know you posted your anger about your sister's doctor in November, but I just read it today.. I am so very sorry for the loss of your sister. To lose someone you love is horrible, but to feel the doctor let you down can only cause anger. My husband was daignosed in October 08. He had been seeing a spine doctor for extreme back pain for almost one year. She also did the pain patches, the pain meds, and wondered if he was having "trouble at home"etc. It just got worse and worse. By the time he insisted something was very wrong and she needed to do more, he had 3 collapsed vertabrae and lost 3 inches in height. She called him at hoe and told him he had cancer (great-wouldn't want to take up her time with an appointmet would we?) I still have extreme anger at that doctor and wish we would have pushed harder. But it comes down to this--you did the best you could for your sister with what knowledge you had to deal with. I can't disagree your doctor let you down, but I hope you can get past the anger (I'm still trying to get over mine, so who am i to even say that?). However, Your sister (through your insightfulness on this site) has helped so many of us going through this horrible disease and I believe she would be very proud of you for continuing to leave messages here in her name and in her memory. You continue to make the valid point that those that finally do get diagnosed with MM need to see a specialist, when someone says something is wrong with their body, the doctors need to listen, until then we have to be our own advocates--it took us more than a year and we still wish we could take that year back and do it over. Again, I'm so very sorry for your loss and pain at losing someone who was so obvious very dear to you, but I thank you for your postings here.
dpcaregiver
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destiny
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Posted: Wed Apr 29th, 2009 12:47 pm |
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peaches:
I understand the anger and pain you feel . my mother was told she had the flu and made to feel like a hypochondriac, if not for many of the same symptoms we shared i would never have known i had this until it was too late, unfortunetly my mom died of non hodgkins lymphoma 9 months after her diagnosis from another doctor.
We know our bodies and when something is wrong with us and its people like you and forums like this that really help others so thank you for yur post and please accept my condolences on your loss as i know from losing my mother with the sadness comes alot of anger and hurt.
my husband even thought for awhile i just needed to get up and move around and when we found out i had cancer he has guilt now for not believing me and that makes me angry because it is the dr i saw that made him feel this way by saying i needed exercise, vitamins etc and it was just a bug going around. Now i understand drs are human but this system of get the patient in and out and the next one in is alot of the problem and it sucks so maybe some drs need educated on caring for their patients and not so much the money issue and how many patients they can see in an hour!
I had this same dr for 11 years and i feel he should have known something was wrong and not brushed me off...sorry ..you see you think of these things and the anger just flows...
so think of the love and fun you shared with your sister and know that she would be proud of you.
dest
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destiny
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Posted: Wed Apr 29th, 2009 12:49 pm |
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| peaches i apologize for this reply again but you said the UW ...is that the university of washington?
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jazzmom
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Posted: Wed Apr 29th, 2009 06:09 pm |
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We, also had a long journey to dx. Mom was walking 5 miles a day and
enjoying life when she was stopped one day in her tracks saying, "my legs
feel like a 2 ton elephant". She was exhausted, felt ill, no energy, aches
in her bones, especially her back etc. etc. We went to her doctor, then
this specialist, then another. She had surgeries, gall bladder,
hysterectomy, stomach scopes (3), colonoscopy (3), angiograms, pulmonary
tests, xrays, etc. etc. All in all we saw at last count 16 different
doctors from Salt Lake, Boise, Portland, & Idaho Falls, ID.
She spent five years mostly in bed getting sicker until her
kidneys finally quit in july of 08. Everyone got to the point including my
dad that they believed it was all in her head because she was sick all the
time. Believe it or not she participated in the Huntsman Cancer PLCO study
for the last several years. But, this study only looks for Prostate, Lung, Colon and
Ovarian cancers. She had MM the entire time she was in this study.
On July 4, 2008 I took her to the hospital with blood pressure of 230/115.
Her kidneys were not functioning. While xraying her kidneys, they found the
lesions, Stage III. She has had this MM for at least 5 years. She suffered greatly, doctor after doctor making telling us this was simply a mental thing. This
from a tough woman who worked on a farm, irrigated, cared for a huge yard and garden, fed animals, golfed, travelled to now being bedridden. I could not get a doctor to listen as I told them this was NOT her, something was terribly wrong. I
believe this story is repeated many times over.
In Mar of 08, mom saw a doctor who specializes in alternative remedies. Though we were skeptical of all this, we were desperate. He took her blood and told us her cells had a cancerous look or characteristic to them and that something was seriously wrong, showing us a picture of normal vs. her blood cells. The first doctor to acknowledge our concerns. I took her to four more doctors trying to get an answer. They CHANGED her depression medicine to Zoloft and added another blood pressure medicine?
Did Dx make it better, yes and no. Finally an answer, and after a STC transplant she is still very fragile. We are not sure the STC has proved successful. We will find out Tuesday of next week. Though I am frustrated, I acknowledge this is life. I have learned alot. Especially from everyone on this forum. It has guided me in her care. At this point, I am confused what to do as far as maintenance or no maintenance as she has not handled any of the medicines well. Sorry to ramble, we sometimes need to express what's inside to someone. Thanks
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jazzmom
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Posted: Wed Apr 29th, 2009 06:16 pm |
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| Another interesting tidbit, my daughter-in-law's grandmother died of MM 15 years ago, my mom has MM, my best friends father died of MM, the nurse who attended to my mom last week in the hospital lost her husband to MM 18 months ago, my sister's sister-in-law has MM and had her STC the same time mom did and was in the room next to us in Salt Lake?
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Wanda
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Posted: Sun May 3rd, 2009 02:09 pm |
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Peaches,
I know exactly how you feel. I've come to not trust DR.'S what-so-ever.
I'm beginning to believe it's about nothing but money. This one sends you to another for something. They say, they have to have their own test & they start all over again.
They won't look at test just done by another DR. When is insurance gonna get wise & realize it's the medical proffessional's fault medical cost is so high. I've had enough radiation in my body to light up a runway & still on no treatment. Bones in my spine fracturing one after another. They just want to push their drugs.
just hang in there, maybe someone will realize & understand what's going on.
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Peaches
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Posted: Fri Jun 12th, 2009 03:30 am |
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Sorry it took so long to answer, no it was not. It was the University of Wisconsin. Her family doctor is the one who didn't even check for anything when her pain was exteme (from Watertown). He just gave her pain patches, pain pills and anti depressants. My daughter carried her into the emergency room one night after I got a phone call telling me she was in extreme pain (I was in Phoenix), that is when it was diagnosed. She was later med flighted to UW where they gave her the strongest Chemo she could take. It helped for a very short time, she could not continue on the medication as her kidney's failed.
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Peaches
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Posted: Fri Jun 12th, 2009 04:20 am |
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Jazz Mom,
Have not visited this site for quite some time. I am sorry to hear about your Mom, hope she is doing better. It is very hard on the family to see a loved one go through this terrible disease. One feels so helpless, we did a lot of praying for strength to get through.
My sister was forced to quit work about 3 years before she died due to pain. I believe she had MM already at this time, her pain just continued to worsen. Her local doctor had her on steriods which is one of the worst treatments for what she actually had as it affects the immune system. Her neck became extemely thick, her stomach got very large (she was always thin and very shapely). Her actions even changed, she started saying wierd things, expecially in the last 6 to 9 months before she died. Looking back, we should have seen it, but we trusted the doctor! WRONG thing to do. After I found out she had MM, I went on the internet to check out the symptoms etc. The first thing I thought (OH! IF ONLY I WOULD HAVE KNOWN ABOUT THE DISEASE AND ITS SYMPTOMS) it was so plain to see.
Her best friend that came down with the disease is doing very well. Her doctor caught it very early, she has had a bone marrow transplant and is currently in remmission. She was very lucky to have a doctor that "listened to her", checked it out and found it. He deserves a medal!
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