Maro,
Another approach would be to discuss administering the Velcade yourself while your mom is on the trip. Not sure how things work in Europe, but Coop routinely does this in the USA:
https://myelomabeacon.org/forum/self-injecting-velcade-my-experience-t3893.html
My onc has already told me that he would support me doing self-injection, should I ever need to go on to Velcade.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is this a good response to Revlimid and dexamethasone?
Thank you, Multibilly. I will submit this possibility to the doctor to see if he accepts.
I hope she won't be refractory to Velcade.
I hope she won't be refractory to Velcade.
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is this a good response to Revlimid and dexamethasone?
Maro, very sorry to hear about the increase in the M-protein.
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
Hello everyone,
I have been having dark thoughts lately making it hard to think positive.
Here is what is going on in my head:
1st line treatment : Mom has tried Revlimid - dexamethasone which worked for 9 months, then stopped working
I imagine that this is not a good sign. She became quickly refractory and disease progressed (no CRAB yet though, luckily). First phase of our journey is over.
We now go on to the 2nd line treatment: VMP (Velcade, melphalan, prednisone). So if it works, is it likely it won't work long considering her myeloma seems to be pretty smart and gets around the treatment? Also, contrary to Revlimid, Velcade is not taken for very long periods.. What happens after the cycles are over if the treatment is working?
Also, if the treatment doesn't work. Then what? We start running out of choices. Does that mean it is the end?
Sure I know there are a few other meds, but none proven to be great (except for daratumumab, possibly).
What are your thoughts?
I really need some positive information that can help me remain optimistic in this case.
Many thanks.
Maro
I have been having dark thoughts lately making it hard to think positive.
Here is what is going on in my head:
1st line treatment : Mom has tried Revlimid - dexamethasone which worked for 9 months, then stopped working
I imagine that this is not a good sign. She became quickly refractory and disease progressed (no CRAB yet though, luckily). First phase of our journey is over.
We now go on to the 2nd line treatment: VMP (Velcade, melphalan, prednisone). So if it works, is it likely it won't work long considering her myeloma seems to be pretty smart and gets around the treatment? Also, contrary to Revlimid, Velcade is not taken for very long periods.. What happens after the cycles are over if the treatment is working?
Also, if the treatment doesn't work. Then what? We start running out of choices. Does that mean it is the end?
Sure I know there are a few other meds, but none proven to be great (except for daratumumab, possibly).
What are your thoughts?
I really need some positive information that can help me remain optimistic in this case.
Many thanks.
Maro
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is this a good response to Revlimid and dexamethasone?
Hello Maro. Thought I would share a couple of thoughts. First your idea to take your Mom 3 weeks to Cypress was wonderful, and great job for you for trying to pull it off. In theory its possible to arrange for some of the treatments on travel, we had discussed that with our doctor, but needless to say, its not an easy thing to pull off. I hope you can make it, but I imagine it probably would be for a shorter period of time (if it all).
Your analysis regarding the present situation I think is very sound. Good that no symptoms have arisen, and you are starting second line of treatment at this time. Bad in the relapse was shorter than average at 9 months and now refractory to Rev.
Generally, the research shows that second remission is shorter than the first remission. However, in the case of your mother, she had a two drug treatment, which at least in the states is somewhat minimalistic at this point of time. Now you are adding two classes of agents which hopefully will have activity, the proteasome inhibitor and the alkylator. If you get a significantly better response (much lower M Spike), which is certainly possible, then you have a good chance of getting a longer second remission than the first.
The dose limiting and the cycle limiting issue is peripheral neuropathy. If your mother gets grade 1 or less, then she should stay on it until best response. If its above grade 1, then you need to work with your doctors. I think the thing is to try to get the best response, and if its not CR, try to get your doctors to alter the treatment with other agents (Kyprolis, Pom, Mab's, clinical trials) to get to CR. As you know, its not a "medical" opinion, and historically, it is not possible to get everyone to CR.
Question, I believe you mentioned your mother was in the "frail" category, due to other health issues. Is that still the case? Lastly, ask your doctor about the FISH test. Was it standard risk?? Or did your mother have some of the bad risk factors? I am not sure about France, however, in other locations, the FISH test could be used to get approved some drugs earlier, that might not otherwise be approved. I am sorry for your difficulties, but I hope you can get that great vacation, and that the multiple myeloma situation improves. Best Regards
Your analysis regarding the present situation I think is very sound. Good that no symptoms have arisen, and you are starting second line of treatment at this time. Bad in the relapse was shorter than average at 9 months and now refractory to Rev.
Generally, the research shows that second remission is shorter than the first remission. However, in the case of your mother, she had a two drug treatment, which at least in the states is somewhat minimalistic at this point of time. Now you are adding two classes of agents which hopefully will have activity, the proteasome inhibitor and the alkylator. If you get a significantly better response (much lower M Spike), which is certainly possible, then you have a good chance of getting a longer second remission than the first.
The dose limiting and the cycle limiting issue is peripheral neuropathy. If your mother gets grade 1 or less, then she should stay on it until best response. If its above grade 1, then you need to work with your doctors. I think the thing is to try to get the best response, and if its not CR, try to get your doctors to alter the treatment with other agents (Kyprolis, Pom, Mab's, clinical trials) to get to CR. As you know, its not a "medical" opinion, and historically, it is not possible to get everyone to CR.
Question, I believe you mentioned your mother was in the "frail" category, due to other health issues. Is that still the case? Lastly, ask your doctor about the FISH test. Was it standard risk?? Or did your mother have some of the bad risk factors? I am not sure about France, however, in other locations, the FISH test could be used to get approved some drugs earlier, that might not otherwise be approved. I am sorry for your difficulties, but I hope you can get that great vacation, and that the multiple myeloma situation improves. Best Regards
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
Hello JPC.
Once again I thank you for replying to my questions. You have so far always been of great help to me and have helped me keep positive while making good points and suggestions at times I've needed it the most.
I just found out her future treatment, she will start on CyBorD this 1st of June. I'll be speaking to the doctor to have the most possible details.
Monoclonal antibodies are starting to be available in France for further relapse. Kyprolis might be a solution at some point.
Regarding our holidays: Yes. I know Cyprus would be great. It is a nice island in the mediteranean sea and will be taking my daughter and wife along with us. It will really do her alot of good. Plan is to leave 28 July to 18th August. I'll be speaking to the doctor about it this Friday in the hope that it will work out one way or another. I truely beleive she needs it and I fear it may be one of our last chances to travel together in relatively good conditions.
To reply to a couple of questions:
My mother is not frail. She is 66 years old with no conditions in particular except for a severe scoliosis which causes back pain. Aside from that no kidey problems, no heart problems, lungs are fine and so far has always been able to combat infections properly (like catching a cold, coughing, etc). Antibiotics have never failed so far when needed.
However, she does have a FISH abnormality: t(14;16). In france it is not considered high risk (it is almost disregarded) whereas I know that it is in the USA.
I hope CyBorD will work.. Even though I'm worried about PN and nausea from the Cy.
I'll be seeing the doctor on Friday. Any suggestions about questions or discussions I should have with the doctor JPC?
Many thanks once again.
Maro
Once again I thank you for replying to my questions. You have so far always been of great help to me and have helped me keep positive while making good points and suggestions at times I've needed it the most.
I just found out her future treatment, she will start on CyBorD this 1st of June. I'll be speaking to the doctor to have the most possible details.
Monoclonal antibodies are starting to be available in France for further relapse. Kyprolis might be a solution at some point.
Regarding our holidays: Yes. I know Cyprus would be great. It is a nice island in the mediteranean sea and will be taking my daughter and wife along with us. It will really do her alot of good. Plan is to leave 28 July to 18th August. I'll be speaking to the doctor about it this Friday in the hope that it will work out one way or another. I truely beleive she needs it and I fear it may be one of our last chances to travel together in relatively good conditions.
To reply to a couple of questions:
My mother is not frail. She is 66 years old with no conditions in particular except for a severe scoliosis which causes back pain. Aside from that no kidey problems, no heart problems, lungs are fine and so far has always been able to combat infections properly (like catching a cold, coughing, etc). Antibiotics have never failed so far when needed.
However, she does have a FISH abnormality: t(14;16). In france it is not considered high risk (it is almost disregarded) whereas I know that it is in the USA.
I hope CyBorD will work.. Even though I'm worried about PN and nausea from the Cy.
I'll be seeing the doctor on Friday. Any suggestions about questions or discussions I should have with the doctor JPC?
Many thanks once again.
Maro
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is this a good response to Revlimid and dexamethasone?
Hello Maro,
It's summer, so I will focus my comment on the vacation issue. Does your center have a relationship with the Cyprus center? Over three weeks, when considering the off week, there will be four visits to the hospital for CyBorD. By the way, my high level comment is that CyBorD is better than VMP, based on some of the older clinical studies.
Scheduling four visits would be ideal in terms of maintaining the schedule, however, lesser may be entirely acceptable as a short term measure. If a patient has a cold or a rash, they hold of treatment for a week or two to let it clear. My lovely wife has had pneumonia twice, and we dialed down the treatment for one or two weeks, but over time, it still kept on working. So, if you could schedule something like two subcutaneous Velcade injections in Cyprus, "y'all" may be able to make it work, and I hope that some such situation does work its way out for you all.
Good luck .
It's summer, so I will focus my comment on the vacation issue. Does your center have a relationship with the Cyprus center? Over three weeks, when considering the off week, there will be four visits to the hospital for CyBorD. By the way, my high level comment is that CyBorD is better than VMP, based on some of the older clinical studies.
Scheduling four visits would be ideal in terms of maintaining the schedule, however, lesser may be entirely acceptable as a short term measure. If a patient has a cold or a rash, they hold of treatment for a week or two to let it clear. My lovely wife has had pneumonia twice, and we dialed down the treatment for one or two weeks, but over time, it still kept on working. So, if you could schedule something like two subcutaneous Velcade injections in Cyprus, "y'all" may be able to make it work, and I hope that some such situation does work its way out for you all.
Good luck .
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
Hello everyone,
Today was our appointment for the first Velcade injection and to discuss being able to go on holidays. I am a bit worried, and I will explain why:
So the treatment is 1st cycle just Velcade + dex as follows:
Week 1: 2x Velcade and 4 times 20 mg dex (Yes, 80 mg! Oh God, I wonder if that isn't too much)
Week 2: 2x Velcade and 4 times 20 mg dex
10 days off
2nd Cycle:
We introduce cyclophosphamide. This is also where we go on holiday from July 28 to August 18.
Week 1: 2x Velcade + 4 times 20 mg dex + cyclophosphamide 500 mg
Week 2: On holiday in Cyprus. We will take cyclophosphamide twice while there and 4 times dex to keep the disease under pressure
10 day off period
We return to France on August 18 and start Cycle 3 the following day.
Week 1, 2: 2x Velcade + 4 times 20 mg dex + cyclophosphamide 500 mg
10 days off
And onto cycle 4, 5 and 6
So the doctor has managed to find a way to let us go on holiday on the 2nd cycle. We will only miss 2 Velcade shots in Week 2 basically, but we'll keep it under pressure with cyclophosphamide and dex.
Then comes the worrying news where I really took a hit today and so did my mother.
We found out that the M-spike had risen to over 2 g/dL and that her hemoglobin dropped to 8.7 g/L (87 mg/L)! She is going to take a shot of something (I forget the name) once a week for 4 weeks to boost it (it's what the cyclist Armstrong used to take to boost oxygen into his blood, which is not allowed in sports).
Her beta-2 microglobulin has fired up to 7.5, which is way into ISS stage 3, and her LDH is pretty high too.
Weird thing though, she feels perfectly fine and even better, since it's been over 2 weeks without Revlimid and dex.
So this fires up our worries: What happened? The Revlimid plus dex took everything down from 48 g/L to 7 g/L, all markers were perfectly fine, everything was going so well!
And suddenly it all stops and everything goes wrong.
Is this a sign of an aggressive myeloma? Is this going to happen again with CyBorD? Of course my mother is asking me many questions and I really don't know what to tell her (questions like "Am I going to make it?", "Does this mean my myeloma is aggressive?", etc.)
I can't but help think that her case is a difficult one and a lot of worry arises from this.
I'm also afraid something may go wrong while abroad.
What are your thoughts about this whole situation?
Today was our appointment for the first Velcade injection and to discuss being able to go on holidays. I am a bit worried, and I will explain why:
So the treatment is 1st cycle just Velcade + dex as follows:
Week 1: 2x Velcade and 4 times 20 mg dex (Yes, 80 mg! Oh God, I wonder if that isn't too much)
Week 2: 2x Velcade and 4 times 20 mg dex
10 days off
2nd Cycle:
We introduce cyclophosphamide. This is also where we go on holiday from July 28 to August 18.
Week 1: 2x Velcade + 4 times 20 mg dex + cyclophosphamide 500 mg
Week 2: On holiday in Cyprus. We will take cyclophosphamide twice while there and 4 times dex to keep the disease under pressure
10 day off period
We return to France on August 18 and start Cycle 3 the following day.
Week 1, 2: 2x Velcade + 4 times 20 mg dex + cyclophosphamide 500 mg
10 days off
And onto cycle 4, 5 and 6
So the doctor has managed to find a way to let us go on holiday on the 2nd cycle. We will only miss 2 Velcade shots in Week 2 basically, but we'll keep it under pressure with cyclophosphamide and dex.
Then comes the worrying news where I really took a hit today and so did my mother.
We found out that the M-spike had risen to over 2 g/dL and that her hemoglobin dropped to 8.7 g/L (87 mg/L)! She is going to take a shot of something (I forget the name) once a week for 4 weeks to boost it (it's what the cyclist Armstrong used to take to boost oxygen into his blood, which is not allowed in sports).
Her beta-2 microglobulin has fired up to 7.5, which is way into ISS stage 3, and her LDH is pretty high too.
Weird thing though, she feels perfectly fine and even better, since it's been over 2 weeks without Revlimid and dex.
So this fires up our worries: What happened? The Revlimid plus dex took everything down from 48 g/L to 7 g/L, all markers were perfectly fine, everything was going so well!
And suddenly it all stops and everything goes wrong.
Is this a sign of an aggressive myeloma? Is this going to happen again with CyBorD? Of course my mother is asking me many questions and I really don't know what to tell her (questions like "Am I going to make it?", "Does this mean my myeloma is aggressive?", etc.)
I can't but help think that her case is a difficult one and a lot of worry arises from this.
I'm also afraid something may go wrong while abroad.
What are your thoughts about this whole situation?
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is this a good response to Revlimid and dexamethasone?
Hello Maro:
I do not know what is the best thing to do, for certain.
Here is a "gut' reaction: Go on the vacation as your doctor had laid it out for you. I think you need to plan for the possibility of a hospital visit, so you should pre-plan for that. Where are you staying? Where is the quality health care etc., etc? Where is the facility with some knowledge of multiple myeloma?
My gut suggests that the possibility of a problem is more than "miniscule", but something less than 50/50. Another consideration is that between now and the time you leave, are things moving up or down.
I understand you are struggling with this. For my own point of view, you clearly love your Mom, so just do the best you can in terms of making a decision, and let it fly.
Good luck.
I do not know what is the best thing to do, for certain.
Here is a "gut' reaction: Go on the vacation as your doctor had laid it out for you. I think you need to plan for the possibility of a hospital visit, so you should pre-plan for that. Where are you staying? Where is the quality health care etc., etc? Where is the facility with some knowledge of multiple myeloma?
My gut suggests that the possibility of a problem is more than "miniscule", but something less than 50/50. Another consideration is that between now and the time you leave, are things moving up or down.
I understand you are struggling with this. For my own point of view, you clearly love your Mom, so just do the best you can in terms of making a decision, and let it fly.
Good luck.
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
Hi JPC. Thank you for your reply.
We used to live in Cyprus for 15 years. My parents moved there when I was about 3 years old.
So we do know our way around there; we have family there and friends. We will be staying with friends there.
Cyprus is a European country, so hospital there can easily be accessible for us. However, I don't know about any myeloma specialists there.
What kind of problems can happen? Of course, there is a full cycle of CyborD before we go, so I'll keep an eye on the results and abort the trip if the results are bad.
I have a couple of questions:
- Is my mom in danger? I mean, can CyBorD change things for her or not considering the current events? My concern here is the fact that Revlimid-dexamethasone worked so well then suddenly all went so fast.. Perhaps because Revlimid-dex was a "small" regimen and didn't allow to clean deep enough.
-ISS staging: My mother was diagnosed with beta-2 microglobulin of 2.9 mg at first. It it about 7.5 mg now, but that is due to treatment stopping since over 2 weeks and M-spike going up. Do we consider the diagnosis 2.9 mg for prognosis or current level?
I'm so confused at the moment. We only have one mother and my mom has gone through everything for me. The thought of loosing her at a relatively young age (she is 66) terrifies me.
What can I expect out of this in the short and long term?
We used to live in Cyprus for 15 years. My parents moved there when I was about 3 years old.
So we do know our way around there; we have family there and friends. We will be staying with friends there.
Cyprus is a European country, so hospital there can easily be accessible for us. However, I don't know about any myeloma specialists there.
What kind of problems can happen? Of course, there is a full cycle of CyborD before we go, so I'll keep an eye on the results and abort the trip if the results are bad.
I have a couple of questions:
- Is my mom in danger? I mean, can CyBorD change things for her or not considering the current events? My concern here is the fact that Revlimid-dexamethasone worked so well then suddenly all went so fast.. Perhaps because Revlimid-dex was a "small" regimen and didn't allow to clean deep enough.
-ISS staging: My mother was diagnosed with beta-2 microglobulin of 2.9 mg at first. It it about 7.5 mg now, but that is due to treatment stopping since over 2 weeks and M-spike going up. Do we consider the diagnosis 2.9 mg for prognosis or current level?
I'm so confused at the moment. We only have one mother and my mom has gone through everything for me. The thought of loosing her at a relatively young age (she is 66) terrifies me.
What can I expect out of this in the short and long term?
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
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