Hi Justine. Please don't give up on your desire to live. I can't believe that your Onc. told you that life-expectancy news. I hope that I too can answer a few of your questions.
I live in rural Victoria and I am lucky enough to be under the guidance of a wonderful Onc/Haem. based at Ballarat. On diagnosis nearly 4 years ago I had a paraprotein level of 88 , 6 bone lesions and a tumour in my spine. My Onc. mapped out my treatment plan which included a BMT if I didn't respond too well to other forms of treatment which after getting severe peripheral neuropathy from Thalidomide,was the case. I had my stem-cell transplant in 2011 but it wasn't too successful. It took my PP count down to 9 and it then rose to 14 where it plateaud for abot 9 months then started to rise again. My Myeloma is quite aggressive which is similar to your type I would think Justine. Anyway, when my PP level got up to 24, my Onc. said that a few doses of chemo again would be beneficial. That was 12 months ago.I have had chemo(cyclophosphamide) and high-dose dex monthly since then. In between these doses my wife and I had 5 weeks in France and I made a trip to Antarctica!
This chemo regime was barely keeping my PP levels in check and when it reached 40 my Onc. applied to the PBS to get me onto Revlimid. To get on to this drug Justine you must show that you have relapsed after undergoing at least 3 other types of treatment. The drug is very expensive,($7000) a monthly dose but if given the go-ahead, it only costs $36 a month for it. Revlimid in Australia is the last resort drug. My Onc. says it is better than having a BMT (Bone Marrow Transplant). In the first 2 weeks being on Rev. it took my PP from 40 to 12 in 4 weeks.
I am on a lower dose of Rev. now as a maintenance drug and hopefully this could keep going for quite a few years,fingers crossed.
Justine, the first course of your treatment is the usual form but I think that you should be having far more informed discussions about you future treatment with your Doc. If he isn,t too up-to-date with all the treatments,then I would be looking for another Onc. or at least another opinion. And please get in touch with the Lukaemia Foundation as they are a fantastic help in regards to many issues with Myeloma.
Please don't hesitate to get in touch if you have more questions Justine, as Libby has also stated. You are young and obviously still quite a fit person which should put you in good stead to help fight multiple myeloma along the way.
Just try and think POSITIVE thoughts, I'm sure it does help Justine......Cheers, Peter
Forums
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bulldog32 - Name: Peter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 59
Re: Why can't I get ... what you get?
Hello,
I'd like to comment on the life-expectancy. You should not worry about it. My Dad was said to only have around 2.5 years. My Doctor pushed us for early ASCT, otherwise, well, you know what the Doctor was trying to imply. Heck, he never did the transplant until two months ago. He's now in remission and planning to go to the States, half a world away, for my Sister's graduation this coming May. Guess what, he got his first compression fracture in May 2010, 3.5 years ago!
Besides, don't you think you're too healthy to die in six months? As you said, you're fine (except those lesions). I cried when I saw my Dad's PET scan, as he has lesions all over his body, especially on his thorax and skulls. Also, four of his lumbars were compressed and fractured. He was in an extreme pain and crying all night, telling me to take care of my Mom and sister. He was in a really, really bad shape. I didn't even think he would survive even close to 2.5 years. On the other hand, you're still able to open your laptop and saying you're fine. God, you must really convince yourself that you can live for a much, much longer time!
By the way, my Dad is high-risk (p53del); but he has never been treated with Revlimid. His only cocktail (virgin, of course) was Velcade-Thal-Dex.
Stem cell harvest is a breeze (especially if you're still young). Dad just did the ASCT. At 62 years, he could get out of the hospital in 21 days. He said it wasn't too bad, he only had diarrhea as the main side effect. He's now recovering at home, and he's doing fine!
You should definitely cheer up and think positive!
I'd like to comment on the life-expectancy. You should not worry about it. My Dad was said to only have around 2.5 years. My Doctor pushed us for early ASCT, otherwise, well, you know what the Doctor was trying to imply. Heck, he never did the transplant until two months ago. He's now in remission and planning to go to the States, half a world away, for my Sister's graduation this coming May. Guess what, he got his first compression fracture in May 2010, 3.5 years ago!
Besides, don't you think you're too healthy to die in six months? As you said, you're fine (except those lesions). I cried when I saw my Dad's PET scan, as he has lesions all over his body, especially on his thorax and skulls. Also, four of his lumbars were compressed and fractured. He was in an extreme pain and crying all night, telling me to take care of my Mom and sister. He was in a really, really bad shape. I didn't even think he would survive even close to 2.5 years. On the other hand, you're still able to open your laptop and saying you're fine. God, you must really convince yourself that you can live for a much, much longer time!
By the way, my Dad is high-risk (p53del); but he has never been treated with Revlimid. His only cocktail (virgin, of course) was Velcade-Thal-Dex.
Stem cell harvest is a breeze (especially if you're still young). Dad just did the ASCT. At 62 years, he could get out of the hospital in 21 days. He said it wasn't too bad, he only had diarrhea as the main side effect. He's now recovering at home, and he's doing fine!
You should definitely cheer up and think positive!
Re: Why can't I get ... what you get?
Justine don't rush the judgement. Velcade is also a very good drug. My regimen of Velcade and predisone put me in remission, but it took 6 months. I'm sure they believe it will work for you or they wouldn't do the SCT.
As far as the SCT, there isn't really any pain associated with it, other than the early needle sticks, it does drag you down obviously, you have been poisoned, and your blood levels drop out of sight. They will give you transfusions to insure your levels are adequate however. I took 18 days to recover enough to leave the hospital and in hindsight I probably shouldn't have pushed it, but I was 71 and younger people seem to fare better. The bad thing, you will lose your hair, but not necessarily your life.
As far as the SCT, there isn't really any pain associated with it, other than the early needle sticks, it does drag you down obviously, you have been poisoned, and your blood levels drop out of sight. They will give you transfusions to insure your levels are adequate however. I took 18 days to recover enough to leave the hospital and in hindsight I probably shouldn't have pushed it, but I was 71 and younger people seem to fare better. The bad thing, you will lose your hair, but not necessarily your life.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Why can't I get ... what you get?
Life expectancy is too hard to gauge. Your prognosis depends on your response to medication, age, etc. I think your doctor was Very PESSIMESTIC. With the treatment path you are on, I think you will see some results. Don't be weary or depressed...move forward with the treatment given and look forward to a positive response. BE OPTIMISTIC! Attitude is everything with this.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Why can't I get ... what you get?
Justine,
I'm sorry to hear that you have joined our group. Hopefully you will be as inspired by these wonderful people as I have been.
The Auto SCT is a journey, but one that offers hope. I was Stage II, and a very similar state as yours. The Rev helped to get mine under control but not a remission. The ASCT gave me a complete remission. I went on to have an Allo SCT last November and continue to remain in remission. There s a 25 year old donor out there that I am very thankful for his gift to me.
Having a fighting, positive attitude helped me. All the best to you.
I'm sorry to hear that you have joined our group. Hopefully you will be as inspired by these wonderful people as I have been.
The Auto SCT is a journey, but one that offers hope. I was Stage II, and a very similar state as yours. The Rev helped to get mine under control but not a remission. The ASCT gave me a complete remission. I went on to have an Allo SCT last November and continue to remain in remission. There s a 25 year old donor out there that I am very thankful for his gift to me.
Having a fighting, positive attitude helped me. All the best to you.
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RickK - Name: RickK
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2011
- Age at diagnosis: 53
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