Recently diagnosed

Rambo115
Rambo115 Member Posts: 3
edited March 2014 in Multiple Myeloma #1
I am a 47 year old male. I was diagnosed with Stage I a few weeks back and have started treatment with Rev/Dex 25mg/40mg. My numbers were about as close to normal as possible accept for the M-spike and the lesion on a fractured rib which seems to have trigerred the treatment. I fractured the rib in dec 07 but it appeared to have healed and numbers didnt start heading up alittle until this summmer- so i assume a slow progressing disease. I am IgG /kappa. I am trying to learn as much as possible and as fast as possible to stay on top of this. I have emailed a number of you and appreciate your sharing of stories and being an inspiration to me. May god humbly protect us and provide the strength we need. I was an athiest until the diagnosis- no athiests in a foxhole! aside from philosphy- I am looking for more info and anyone else in similar stage and or more further along such that I have a benchmark as to what I will feel- when will I weaken, can I work, etc, and obciously I seem to gain comfort and strength from the dialogues- so for those who have emailed me--thank you- and I am hear for you as well. thank you to all who respond.

Comments

  • jimmymac526
    jimmymac526 Member Posts: 2
    #2
    Multiple Meloma
    Just read your situation and wonder if you have learned more. I was just diagnosed and started Valcade with Zometa last week. I am really new to this disease and would appreciate any feed back. I am 70 and went in for a shoulder replacement and my m spiked as well and the bone marrow biopsy confirmed the diagnosis.
  • spencedoggie
    spencedoggie Member Posts: 1
    #3
    A year down the line
    I just logged on to this discussion board for the first time. I have kappa free light chain myeloma. I had multiple broken ribs that would not heal and a deteriorating clavicle. I was first diagnosed in February 07. I started on Thalidomide and Dex. My numbers did not go down in the first month (expected) and did go down in the 2nd month. In the 4th month my numbers hit an all time high. My Docs and I decided to go for a Bone Marrow Transplant. All that time I was feeling worse and worse mostly from bone pain which had spread to my left leg. I had trouble walking and in the end I was in a wheel chair for any distance and a cane or walker for around the house. I also felt more and more sick with nausea and vomiting.

    My Bone Marrow Transplant started with the harvesting of stem cells in late June with a second round in July. During the course of the summer it was discoered that I had other complications that involved my kidneys. That was what was causing the nausea and vomiting. That also added to the complications in the BMT. The BMT was hell for me. I spent 9 days in the ICU and had to fight for my life. My doc warned me that given my complications it would be rough. I was in the hospital from Sept 5th thru the 27th of Oct.
    BMTs do not usually go like that so take mine as an extreme example of the worst case scenario.
    I just got my 100 day (post BMT) blood test and I have a normal amount af kappa free light chains. I am cancer free. BTW I am 41 years old and Male.
  • inswhiz
    inswhiz Member Posts: 1
    #4
    spencedoggie said:

    A year down the line
    I just logged on to this discussion board for the first time. I have kappa free light chain myeloma. I had multiple broken ribs that would not heal and a deteriorating clavicle. I was first diagnosed in February 07. I started on Thalidomide and Dex. My numbers did not go down in the first month (expected) and did go down in the 2nd month. In the 4th month my numbers hit an all time high. My Docs and I decided to go for a Bone Marrow Transplant. All that time I was feeling worse and worse mostly from bone pain which had spread to my left leg. I had trouble walking and in the end I was in a wheel chair for any distance and a cane or walker for around the house. I also felt more and more sick with nausea and vomiting.

    My Bone Marrow Transplant started with the harvesting of stem cells in late June with a second round in July. During the course of the summer it was discoered that I had other complications that involved my kidneys. That was what was causing the nausea and vomiting. That also added to the complications in the BMT. The BMT was hell for me. I spent 9 days in the ICU and had to fight for my life. My doc warned me that given my complications it would be rough. I was in the hospital from Sept 5th thru the 27th of Oct.
    BMTs do not usually go like that so take mine as an extreme example of the worst case scenario.
    I just got my 100 day (post BMT) blood test and I have a normal amount af kappa free light chains. I am cancer free. BTW I am 41 years old and Male.

    Hacking cough with thalomid and decadron
    I have a friend that just started oral chemo two weeks ago for multiple myeloma and has developed a horrible raspy cough as a result. It sounds like there is something that should be coughed up but there isn't. Since you were on the same meds, what did you do for your cough if you developed this same side effect? How long did it last if you had it?

    By the way, congratulations on being cancer free. I can only hope for the same for my friend.
  • HisAngel
    HisAngel Member Posts: 1
    #5
    I would like to know if you
    I would like to know if you have any information you can give me.My boyfriend of almost 5 years was just diagnosed with Multiple Myeloma.I am devastated....hes my life and I cant picture losing him~we want a future together but so much of what I am reading says this cancer has a very bleak outcome~not a very long survival rate etc...He is only 37 years old and other then being overweight is in very good health.I'm beside myself and I want as much info as I can get for him Please help me...I havent stopped crying in days
  • ken123
    ken123 Member Posts: 1
    #6
    10 years and going strong
    Hello, 10 years ago my dad was diagnosed with end stage MM and things did not go so well for him, but at the same time his Doctor James Tamkin was diagnosed with Stage 1 and he is doing great! He did an internet radio interview on 4/25/09 you should listen to. go to www.talkradioone.com and then click the on demand tab, scroll down until you see the Steven Spierer show on 4/25/09 interview with James Tamkin.
  • WHW
    WHW Member Posts: 189
    #7
    HisAngel said:

    I would like to know if you
    I would like to know if you have any information you can give me.My boyfriend of almost 5 years was just diagnosed with Multiple Myeloma.I am devastated....hes my life and I cant picture losing him~we want a future together but so much of what I am reading says this cancer has a very bleak outcome~not a very long survival rate etc...He is only 37 years old and other then being overweight is in very good health.I'm beside myself and I want as much info as I can get for him Please help me...I havent stopped crying in days

    My Wife Was Diagnosed in 2005
    HisAngel,

    My wife was diagnosed with MM in November 2005. I have been by her side and participated in all the research, treatment planning and actual treatment (as much as the spouse can) for the last four years.

    The info I have acquired is far more than I would attempt to post here. If you want, feel free to contact me via email at wwolfe3rd@cfl.rr.com. My wife and I would be more than happy to pass along anything we can about our research and experiences.

    Above all else the first thing you need to do if you haven't already is contact the International Myeloma Foundation. This organization is by far the most supportive and informational group you will ever come across in you search for information. Contact them at http://myeloma.org. DO IT TODAY !!! Call the support number and ask for Nancy Baxter. Tell her Sonny and Lynn from Orlando passed her name along.

    There is a lot to learn, a lot to be taken with a grain of salt as it may not apply to you case and a lot of love and support to be shared by these folks.

    My wife and I have met with them personally and been asked to participant in round table discussions and conferences over the last four years.

    My wife was diagnosed late in the process (stage four). Your husband being diagnosed early on is a real blessing. He has so many options and so much future to look forward to.

    I personally know of folks who have been dealing with MM for 20 years or more while leading near normal lives. You know like having children, grand-children, great careers and vacations, just normal life.

    Call the IMF and then email us if you want. You are not alone in this. By the way, there has been more research and medical development in the treatment of MM in the last 10 years than in the 50 previous. The outlook is good. Keep the faith.

    As as side note, I am on this site today because I was diagnosed with Prostate Cancer just last week. All of my searches for the right path for my wife has certainly prepared me for a calmer approach in dealing with this. As in life "It is What It is" and you just have to deal with it.

    Sonny and Lynn
  • Poppy1952
    Poppy1952 Member Posts: 1
    #8
    HisAngel said:

    I would like to know if you
    I would like to know if you have any information you can give me.My boyfriend of almost 5 years was just diagnosed with Multiple Myeloma.I am devastated....hes my life and I cant picture losing him~we want a future together but so much of what I am reading says this cancer has a very bleak outcome~not a very long survival rate etc...He is only 37 years old and other then being overweight is in very good health.I'm beside myself and I want as much info as I can get for him Please help me...I havent stopped crying in days

    There is hope
    I was diagnosed with MM in Sept 2006. i had a dr who was an old school thinker. Meaning he didn't think a stem cell transplant was an option unless you were at 100% remission. Fortunately he retired an my new dr fresh out of Mayo clinic got me hooked up with Dr Berryman at Baylor in Dallas in February 2009. Here it is the end of july and I am 42 days post transplant. It was a complete success. My own good cells were harvested and frozen. I was given 2 doses of the worst chemo I have ever taken to kill everything left in my body, then my good cells were given back to me. My abnormal protein was at 42.0 now it is at 0.9 and going down. I also have many many people praying for me and I also believe that the anwsered prayers are what made the diference in my relatively easy transplant. i wasn't very sick at all. I did lose 44 lbs. which I needed to do. So I learned a valuable lesson. ALWAYS get second opinion! If I had done that early in my diagnosis my amount of good cells to harvest would have been 10 fold so as told by dr. I had MM and exposed to too much chemo for too long. I expect my transplant to last 3-5 years where as it might have lasted a lot longer. So don't give up and don't listen to all of the doom and gloom that's out there. God has a plan for all of us. and he has one for your boyfriend. Poppy
  • Sam726
    Sam726 Member Posts: 233
    #9
    HisAngel said:

    I would like to know if you
    I would like to know if you have any information you can give me.My boyfriend of almost 5 years was just diagnosed with Multiple Myeloma.I am devastated....hes my life and I cant picture losing him~we want a future together but so much of what I am reading says this cancer has a very bleak outcome~not a very long survival rate etc...He is only 37 years old and other then being overweight is in very good health.I'm beside myself and I want as much info as I can get for him Please help me...I havent stopped crying in days

    sorry to hear
    Hi there...I dont know a whole lot about the disease but have a very good friend that was diagnosed 12 years ago at the age of 32. They gave her 6-8 months to live and she is here, living life 12 years later and still going strong. Not sure she is in complete remission but you would never know the difference. I hope this helps...they have come a long way in 12 years so keep your head up and be strong for your boyfriend. He will need it.
  • SARGE
    SARGE Member Posts: 1
    #10
    HisAngel said:

    I would like to know if you
    I would like to know if you have any information you can give me.My boyfriend of almost 5 years was just diagnosed with Multiple Myeloma.I am devastated....hes my life and I cant picture losing him~we want a future together but so much of what I am reading says this cancer has a very bleak outcome~not a very long survival rate etc...He is only 37 years old and other then being overweight is in very good health.I'm beside myself and I want as much info as I can get for him Please help me...I havent stopped crying in days

    Angle
    Hang in there
    I cant
    Angle
    Hang in there
    I cant promis that it will get any better but keep the faith.
    Lots of prayer is the answer.My wife has been fighting this for a year and a half so far and we WILL NOT GIVE UP, neither should you.
    Some things to think about is that cancer needs to live in an asictic enviornment and thrives on sugars.
    See what you can do about cutting out starches and sugars from his diet.
    There is some meds that can help in changing his PH to alkaline so as to further slow if not stop the cancer.
    My wife just started the chemo pill so we will see how this goes.
    They took out her lymph nodes and this slowed if not stopped the spread of the cancer, Just DO NOT GIVE IN.
    Her curent med is TIMADOR and this will help stop the spread and slow the groth of the cells.
    Costa about 3700 a month for the meds, thank god for insurance.
    The side effects that we are going through so far is a lot of vomitimg and upset stomach.
    I pray that this is all we have to face.
    I just dont know yet.
    Hope this helped some.
    I will keep you in our prayers and take care.
    Enjoy every moment you have
    Later
    Sarge
  • Scotts007
    Scotts007 Member Posts: 1
    #11
    ken123 said:

    10 years and going strong
    Hello, 10 years ago my dad was diagnosed with end stage MM and things did not go so well for him, but at the same time his Doctor James Tamkin was diagnosed with Stage 1 and he is doing great! He did an internet radio interview on 4/25/09 you should listen to. go to www.talkradioone.com and then click the on demand tab, scroll down until you see the Steven Spierer show on 4/25/09 interview with James Tamkin.

    going strong
    I kicked this string off one year ago. When I started I ewas alone, confused and scared. I want to thank everyone I have gotten to know this past year who have provided guidance, education, strength and humility by sharing incredible stories both happy and sad. I am stilll on Rev/Dex my M spike is about .4 and has been there for quite some time. All other numbers are normal and my tumor has shrunken to the point where my rib is healing itself. I pray everyday and have completely changed my life. While I live one day at a time - everyday is special. I work out daily, eat healthy and eliominated strss (the old stuff doent mean anything and cant bother me) and lastly I have brough God into my life. So again- thanks all and appreciate the little things because they're what matters most! Stay healthy all and may God bless each of you and your families.
  • Unknown
    Unknown
    #12
    This comment has been removed by the Moderator

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