Hi all,
This is my first post and I just wanted to know how long it usually is to the start of treatment after diagnosis.
I'm worried about my worsening condition with no start date in sight for my planned Velcade, thalidomide, and dexamethasone (VTD) treatment.
Thanks,
Simone
Forums
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Blue Libran - Name: Simone
- Who do you know with myeloma?: I have Myeloma
- When were you/they diagnosed?: January 2017
- Age at diagnosis: 38
Re: Length of time from diagnosis to start of treatment?
Hi Blue Libran,
I am sorry to hear that you have this illness at such a young age, but it is good that you are in the hands of the experts. May I suggest that you note any details you may have about your diagnosis and the type of myeloma, any blood test results also may be useful to the many people here on the Myeloma Beacon who are very knowledgeable and who will try to help you.
Speaking for myself, I have been ill since 2008 and I had my first treatment in 2012, I relapsed in 2015 but they simply observed my monthly results for nine months before re-starting treatment last summer. I have stopped treatment two weeks ago, and yesterday I started my maintenance treatment which consists of Pomalyst (pomalidomide, Imnovid) 4 mg for 21 days each month and dexamethasone 20 mg once per week. I have not had a stem cell transplant, although my stem cells were collected five years ago. If I may say so, I think that in view of your youth the stem cell transplant (bone marrow transplant ) will be of interest to you. Of course, I speak only as a non-professional.
I have written about my treatments in some detail here on The Beacon. See, for example, this thread:
"Pomalyst, cyclophosphamide & dexamethasone treatment" (started June 29, 2016)
Finally, I would suggest that you contact your doctor or health care provider for an update, which will put your mind at ease as to when treatment will begin – especially if you are experiencing problems.
Best wishes,
Victor L
I am sorry to hear that you have this illness at such a young age, but it is good that you are in the hands of the experts. May I suggest that you note any details you may have about your diagnosis and the type of myeloma, any blood test results also may be useful to the many people here on the Myeloma Beacon who are very knowledgeable and who will try to help you.
Speaking for myself, I have been ill since 2008 and I had my first treatment in 2012, I relapsed in 2015 but they simply observed my monthly results for nine months before re-starting treatment last summer. I have stopped treatment two weeks ago, and yesterday I started my maintenance treatment which consists of Pomalyst (pomalidomide, Imnovid) 4 mg for 21 days each month and dexamethasone 20 mg once per week. I have not had a stem cell transplant, although my stem cells were collected five years ago. If I may say so, I think that in view of your youth the stem cell transplant (bone marrow transplant ) will be of interest to you. Of course, I speak only as a non-professional.
I have written about my treatments in some detail here on The Beacon. See, for example, this thread:
"Pomalyst, cyclophosphamide & dexamethasone treatment" (started June 29, 2016)
Finally, I would suggest that you contact your doctor or health care provider for an update, which will put your mind at ease as to when treatment will begin – especially if you are experiencing problems.
Best wishes,
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Length of time from diagnosis to start of treatment?
I think you will find a wide variation on this. Some find out they have multiple myeloma due to a defining event such as lesions or fractures, while others like me have it diagnosed almost by accident. Those in the first group usually proceed to treatment quite quickly, while the second group can go a long time before initiating treatment. As for myself, I went over five years from initial diagnosis to starting treatment. I still have no symptoms, but with my IgG level hitting 7000, the doctor figured it was time.
Peter
Peter
Re: Length of time from diagnosis to start of treatment?
I started treatment with Velcade, Revlimid and dexamethasone 11 days after my diagnosis was confirmed. I'm guessing it took about that long for my insurance to approve the treatments.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Length of time from diagnosis to start of treatment?
I would respectfully disagree with Bandito. If it has been confirmed that you have a diagnosis of multiple myeloma by virtue of meeting one or more of the CRAB criteria (CRAB = hyperCalcemia, Renal dysfunction, Anemia, Bone damage via lytic lesions), then the generally accepted practice is to begin treatment right away since you are experiencing end-organ damage. If, however, your diagnosis is based solely on meeting one of the new Myeloma Defining Events (see https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/ ), then the initiation of treatment may be at the discretion of the oncologist.
Since you are in the UK and are going to receive thalidomide, I'm guessing that your scheduled treatment plan is to have induction treatment followed by an autologous stem cell transplant? Could the scheduling of the transplant be holding up your induction treatment?
Since you are in the UK and are going to receive thalidomide, I'm guessing that your scheduled treatment plan is to have induction treatment followed by an autologous stem cell transplant? Could the scheduling of the transplant be holding up your induction treatment?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Length of time from diagnosis to start of treatment?
Hi all,
Thanks so much for your responses. I was quite upset yesterday after learning that my treatment is being delayed again.
I was told that I would need to start treatment straight away when I was diagnosed in January. I'd collapsed walking to work in October and spent eight days in hospital with severe anemia and neutropenia. Since then I've needed fortnightly blood transfusions to keep me going.
I was told that the transfusions would be scheduled. That never happened, so I've been hospitalised several times after collapsing before I could get a transfusion. My consultants have also moved appointments with no notice or explication. I really have to fight for answers. There seems to be scheduling conflicts between appointment dates and tests, where my consultants leave it too late to order tests and then have to reschedule appointment whilst they wait for results.
My hemoglobin hasn't managed to rise higher than 88 and has been as low as 62. Once it starts to drop, it goes from the 80s to low 70s in three to four days. My white blood cell count is currently 1.1, but has been as low as 0.2 in October. Now I'm having nose bleeds and my gums bleed. My bone pain is also worse and being managed with naproxen.
All in all this has meant that, despite already speaking to the lead consultant twice, I'm still waiting to start treatment. I'm quite happy to have any tests I need, but am I wrong in thinking that diary management is not an acceptable reason to delay a patients treatment by three months? It's as if their weekly meetings are a surprise to them.
Thanks so much for your responses. I was quite upset yesterday after learning that my treatment is being delayed again.
I was told that I would need to start treatment straight away when I was diagnosed in January. I'd collapsed walking to work in October and spent eight days in hospital with severe anemia and neutropenia. Since then I've needed fortnightly blood transfusions to keep me going.
I was told that the transfusions would be scheduled. That never happened, so I've been hospitalised several times after collapsing before I could get a transfusion. My consultants have also moved appointments with no notice or explication. I really have to fight for answers. There seems to be scheduling conflicts between appointment dates and tests, where my consultants leave it too late to order tests and then have to reschedule appointment whilst they wait for results.
My hemoglobin hasn't managed to rise higher than 88 and has been as low as 62. Once it starts to drop, it goes from the 80s to low 70s in three to four days. My white blood cell count is currently 1.1, but has been as low as 0.2 in October. Now I'm having nose bleeds and my gums bleed. My bone pain is also worse and being managed with naproxen.
All in all this has meant that, despite already speaking to the lead consultant twice, I'm still waiting to start treatment. I'm quite happy to have any tests I need, but am I wrong in thinking that diary management is not an acceptable reason to delay a patients treatment by three months? It's as if their weekly meetings are a surprise to them.
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Blue Libran - Name: Simone
- Who do you know with myeloma?: I have Myeloma
- When were you/they diagnosed?: January 2017
- Age at diagnosis: 38
Re: Length of time from diagnosis to start of treatment?
Blue Libran-
Is there any way that you can go to a different group of consultants and hopefully a myeloma specialist? I'm not quite sure how it all works in the UK. But, it sounds like you need treatment ASAP. You also should be getting the transfusions that you need in a timely manner. From your report of nosebleeds it also sounds like you need platelets. I know that is one of the signs for me that my platelets are very low. Have you been given an injection of Neulasta (pegfilgrastim) to increase your white cell level?
See if making a pest of yourself will get your consultant to pay attention to you and your condition. Something should be done to help you.
Nancy in Phila
Is there any way that you can go to a different group of consultants and hopefully a myeloma specialist? I'm not quite sure how it all works in the UK. But, it sounds like you need treatment ASAP. You also should be getting the transfusions that you need in a timely manner. From your report of nosebleeds it also sounds like you need platelets. I know that is one of the signs for me that my platelets are very low. Have you been given an injection of Neulasta (pegfilgrastim) to increase your white cell level?
See if making a pest of yourself will get your consultant to pay attention to you and your condition. Something should be done to help you.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Length of time from diagnosis to start of treatment?
Hi Blue Libran,
I can certainly understand your concern about the delay in starting treatments. Especially if you require blood transfusions, it would seem that you do need prompt attention. I started bisphosphonate infusions the very day my diagnosis was confirmed, since it was pretty much of a foregone conclusion (the myeloma was confirmed in my blood and I had fractures and lesions). (I was also the only person in the treatment room sitting there with tears rolling down my face, for the diagnosis upset me!) The Velcade and dex treatment started soon, a few weeks afterward, as I recall.
At first the system of getting blood tests and x-rays and other tests was confusing to me, but I read a lot about myeloma, asked lots of questions, and was able to learn the ropes of this. Other patients who I talked with also helped me. I remember one patient explaining 'standing orders' to me (when a doctor gets the same blood tests ordered at regular intervals). Another friend explained that he was on a clinical trial for Revlimid, which I had never heard of, but did take afterwards.
At our cancer centre, although the appointments are given out, they can be changed to your schedule if you can be there in person to book them, or if you phone in to change an appointment. I hope that helps and that you can get onto treatment soon.
I can certainly understand your concern about the delay in starting treatments. Especially if you require blood transfusions, it would seem that you do need prompt attention. I started bisphosphonate infusions the very day my diagnosis was confirmed, since it was pretty much of a foregone conclusion (the myeloma was confirmed in my blood and I had fractures and lesions). (I was also the only person in the treatment room sitting there with tears rolling down my face, for the diagnosis upset me!) The Velcade and dex treatment started soon, a few weeks afterward, as I recall.
At first the system of getting blood tests and x-rays and other tests was confusing to me, but I read a lot about myeloma, asked lots of questions, and was able to learn the ropes of this. Other patients who I talked with also helped me. I remember one patient explaining 'standing orders' to me (when a doctor gets the same blood tests ordered at regular intervals). Another friend explained that he was on a clinical trial for Revlimid, which I had never heard of, but did take afterwards.
At our cancer centre, although the appointments are given out, they can be changed to your schedule if you can be there in person to book them, or if you phone in to change an appointment. I hope that helps and that you can get onto treatment soon.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Length of time from diagnosis to start of treatment?
My diagnosis was indeed by the new criteria. My kappa/lambda ratio was over 100 for several years but I had no other symptoms. To this day, I don't even have osteopenia.
Re: Length of time from diagnosis to start of treatment?
Simone,
Sorry you are having a difficult time getting started with your treatment.
My husband's journey started relatively quickly. The first time he saw the hem/onc was December of 2016. Results from a bone marrow biopsy came back on January 15, and treatment was originally scheduled for January 23. We had to wait another week, however, for insurance approval, but he started Velcade and dex on January 30 and Revlimid in March. He is scheduled for a stem cell transplant in July so everything is moving quite quickly.
He didn't necessarily have all the myeloma defining events but extremely high light chains in his urine (7600 mg/d) along with an M-spike and 50% plasma cells in the bone marrow biopsy.
Hopefully, you will be able to get started on your treatment very soon.
Sorry you are having a difficult time getting started with your treatment.
My husband's journey started relatively quickly. The first time he saw the hem/onc was December of 2016. Results from a bone marrow biopsy came back on January 15, and treatment was originally scheduled for January 23. We had to wait another week, however, for insurance approval, but he started Velcade and dex on January 30 and Revlimid in March. He is scheduled for a stem cell transplant in July so everything is moving quite quickly.
He didn't necessarily have all the myeloma defining events but extremely high light chains in his urine (7600 mg/d) along with an M-spike and 50% plasma cells in the bone marrow biopsy.
Hopefully, you will be able to get started on your treatment very soon.
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