It's The 4Th Treatment Already. Any More Options?

Hi all,

This is a very informative site, and I would like to see if I could get some ideas for the next visit my mom has with her oncologist. 

My mom is 82.  She was diagnosed with MM in March of 2006. We were told she had the most aggresive form of MM (IgA). They started her on Thalidomide 50 mg because of her age, but it was still too much for her, so they switched her to Melphalan and Predinosa. She was on this combination for 6 weeks, from August 2006 until October 2006. The results were not as expected, so her doctor in Texas decided to try a more aggresive treatment (Velcade and Doxorubicin, with Dexametasone). She started with this treatment in October 2006. 

In January 2007 she came to live with me in Sacramento, CA. Her doctor here continued with the Velcade, Doxoribicin, Desametasone combination.  And my mom seemed to be responding to this treatment. The protein of the Myeloma decreased and by May, the doctor gave her 3 months of a break from treatment.  Unfortunately, by August 2007 the numbers had increased again so they started her with Revlimid. Her initial response to this treatment seemed good, but it didn't last. By December the MM numbers had gone up again, so she was switched to Cyclophosphamide 500 mg once per week. This treatment has been too strong for her; and she has had a transfusion every two weeks; so her doctor decided to reduced the dose to 250 mg.

I'm not sure this treatment is working.  The little lumps she has in her legs (an now also in one of her eye lids) are still there, and it seems she is getting more. 

 So, she is already on her 4th treatment. Unfortunately, so far none of the treatments seemed to have worked as expected. Or, when they worked, they do for a few months.  We know that there is not cure for this illness, but we had hoped that the benefits of one of the treatments would last a little longer.

That has not happened, and she has been getting weaker and weaker. After using the  (Velcade and Doxorubicin, with Dexametasone) she became very weak and the neuropathy was bad in in her legs; but she seemed to recover a lot with some therapy and Gabapentin. However, the improvement stopped, and although she is not doing as bad as then, her legs never recovered completely and seem to be losing strength again.

Does any one have any ideas as to what other options of treatment are out there?  We know she has had almost all of the most recently approved treatments. But, do you know if it's possible to retry any of them or in a new combination?

I don't want to think that we are out of choices.

I would appreciate any information or suggestions.

 Maria

.  

On 1/19/2008 coquis wrote:

Hi all,

This is a very informative site, and I would like to see if I could get some ideas for the next visit my mom has with her oncologist. 

My mom is 82.  She was diagnosed with MM in March of 2006. We were told she had the most aggresive form of MM (IgA). They started her on Thalidomide 50 mg because of her age, but it was still too much for her, so they switched her to Melphalan and Predinosa. She was on this combination for 6 weeks, from August 2006 until October 2006. The results were not as expected, so her doctor in Texas decided to try a more aggresive treatment (Velcade and Doxorubicin, with Dexametasone). She started with this treatment in October 2006. 

In January 2007 she came to live with me in Sacramento, CA. Her doctor here continued with the Velcade, Doxoribicin, Desametasone combination.  And my mom seemed to be responding to this treatment. The protein of the Myeloma decreased and by May, the doctor gave her 3 months of a break from treatment.  Unfortunately, by August 2007 the numbers had increased again so they started her with Revlimid. Her initial response to this treatment seemed good, but it didn't last. By December the MM numbers had gone up again, so she was switched to Cyclophosphamide 500 mg once per week. This treatment has been too strong for her; and she has had a transfusion every two weeks; so her doctor decided to reduced the dose to 250 mg.

I'm not sure this treatment is working.  The little lumps she has in her legs (an now also in one of her eye lids) are still there, and it seems she is getting more. 

 So, she is already on her 4th treatment. Unfortunately, so far none of the treatments seemed to have worked as expected. Or, when they worked, they do for a few months.  We know that there is not cure for this illness, but we had hoped that the benefits of one of the treatments would last a little longer.

That has not happened, and she has been getting weaker and weaker. After using the  (Velcade and Doxorubicin, with Dexametasone) she became very weak and the neuropathy was bad in in her legs; but she seemed to recover a lot with some therapy and Gabapentin. However, the improvement stopped, and although she is not doing as bad as then, her legs never recovered completely and seem to be losing strength again.

Does any one have any ideas as to what other options of treatment are out there?  We know she has had almost all of the most recently approved treatments. But, do you know if it's possible to retry any of them or in a new combination?

I don't want to think that we are out of choices.

I would appreciate any information or suggestions.

 Maria

 

 

.  

Dear Maria,

I am a 50 y.o male diagnosed with MM Igg in 2004 after having numerous infections. For approximately 1 year I was not treated because the M-protein was fairly low and stable. Then the #'s started to creep up. My 1st treatment was a study (I go to Johns Hopkins), Valcade and Thalidomide. An 8 cycle treatment. I made it to cycle 7 but had to stop because of neuropathy in my feet. As you may know both these drugs have a high risk of neuropathy. Anyway, I had a "partial remission", as I was on these drugs. But, by the 7th treatment, the #'s did start to increase. So much for that one. I still take pain meds for the neuropathy. Next came a try with Cytoxin. That didn't touch me. No effect at all. Then I tried Revlimid and Dexamethasone. 25 mg of Revlimid every day for 21 days and a week off. Dex was 40 mg a day for 4 days every 2 weeks. This helped, again, a partial remission. And again, the #'s went up. My doc then added Biaxin, an antibiotic, 500 mg every day. This worked the best. The #'s took a nose dive. I was on this for about 5-6 months. Then guess what, that's right, the #'s started going up. By the way, the dex side effects were bad too. Poor sleep, emotional lability,altered taste, etc. Now, this is 11/07. My doc offers some more options of treatments that have been used or are being used, or a trial. I opt for the trial. It's a phase 1 trial, never been tried on a human. I'm subject # 1. It's interferon for 4 weeks and then add on interleukin. Sub-q injections every day. The idea here was the interferon would promote the myeloma cell growth, and then the interleukin would kill them. Well, that may be the case but I only made it to 1 month of interferon and 3 doses of interleukin. The side effects were intolerable. Flu like symptoms, fever of 103, nausea, confusion, lack of concentration, motivation, zero energy. The only good from it was the #'s did not change. So, here I am now. My #'s as of this week are, total protein-9.0, M-spike 2.84, B-2-3.52, Igg-3925. All up from last month. Next week I try another trial. A drug maker called Geron has a drug that is supposed to target the telomere on the myeloma cell chromosome. Again, this is a phase 1 trial. It's an infusion once a week for 3 weeks. Then check blood, and continue. Keep your fingers crossed.

I hope I haven't rambled on or put to much in. There are so many factors. Stage of disease, age, other health problems. I know some people had a complete response from the Valcade/Thalidomide trial, although not many. To me, it's a matter of keep trying. Unfortunately, everything I've tried treats the myeloma, it doesn't cure it.

Either way, I wish you and your mother all the best. If there's anything else I can do or have other questions, let me know. My prayers are with you.

                         Rick

Two suggestions:

One option I didn't hear you mention was a 3-way combo of Vel/Rev/Dex. This has recently shown in trials to possibly be the most effective treatment for MM.

The other idea is to look through the 100's of clinical trials for myeloma. You can find a database listing at the following location.

http://www.multiplemyeloma.org/clinical_trials/4.09.php

The very best to you and your family.

Craig 

Hi Rick,

Thanks for you reply.  You are giving me several ideas of possible treatments, so I can ask the doctor this coming Wednesday.  I just hope that at least the numbers for the M-protein are not too high. 

I have a question about the Revlimid and Dexamethasone treatment: you said your doctor added Biaxin when the numbers went up?  So,they didn't stop that treatment, but added another medication, right?  I wonder if that combination is still and option for her. I'll ask her doctor about this.

My mom was on Revlimid only two cycles, in October and November 2007. And because the dexametasone has been bad for my mom because she is a
diabetic (it increases her glucose in the blood), her doctor decided not to give her Dexametasone when he put her on the
Revlimid treatment. 

Anyhow, it's worth asking. 

Thanks again for all of these ideas!

Be well. 

Maria

Hi Craig,

Yes, I have seen several of the people in this site mentioned this 3-way combo of Vel/Rev/Dex, so I'm ready to ask my mom's doctor this coming Wednesday.

 But, is it possible to get approval for that combination, when my mom has already been on Vel and Rev on different treatments?  I know this is a question for the insurance company, which is an issue that worries me.  So far, the insurance has approved everything the doctor has recommended; but you never know when they will start complaining.

Another issue is that most of the people who post information on this site mentioned their M-protein of concern is the IgG.  My mom's is the IgA, so I don't know if that makes a difference. For what I've read, the treatments are the same, but I guess the response to treatments may be different.

How do you go about clinical trials?  The doctors refer you to them, or you go ahead and contact the researchers yourself? 

I wish my mom's age will not be an obstacle for this or for any future treatments. She is a fighter, and she won't give up if she knows there are still options out there.  I just wish her doctors won't give up on her, either because of her age. Although her doctors seem to be very caring, somehow I got the impression that after they tried the ''big guys'' of treatments, they may seem to be running out of options.

I just dread the moment they say there's nothing else to do. How to know when that's is true?  When I see how she is doing, weaker some days but less weak others (today she prepared breakfast for me!), I think they should try all possible options out there, as long as she doesn't get worse.  

Anyhow, thanks for your suggestions.

All the best to you and your family,

Maria 

I am not sure about the criteria for Vel/Rev/Dex, but definitely bring it up with the Dr. It could be that the combo works differently together than separately so she still might be a candidate.

As for clinical trials I believe you can apply yourself, but would probably need her medical records sent to the researchers. You'll have to carefully read through the requirements. Most are for relapse or unresponsive cases like your mother, so she would stand a good chance of acceptance.

Please keep us posted.

Best regards to all of you.

Craig 

Maria: what a sad fix you are in. As a MM survivor and retired oncology nurse this is only a decision your mother can make.  MM is very painful, so do the best you can to ease her pain and make her comfortable. Please remember that most of the MM drugs have severe neuropathy as side effects. (that is extreme pain on the nerve endings) so if you can keep it under control with some dexamethasone (dr prescribed of course) and some light treatment, it may be enough.  At this stage and your mothers age the mostly likely problem is going to be a secondary infection.  Ask you mother what she wants.. NOt what you would like as we all want our mothers to live forever...I just buried my friend and she was 79, if she had her way no treatment but her children wished itand she did it for them..So these are things to be thought on.  Just make sure your mother is on an easy diet, cut down the sugar, give some immune system boosters, and some coQ10 and this helps with the symptoms by boosting the body's natural defenses.

I can only speak from experience and everyone is an individual so do the best you can as a loving daughter..God bless you in your quest..mms

On 1/19/2008 coquis wrote:

Hi all,

This is a very informative site, and I would like to see if I could get some ideas for the next visit my mom has with her oncologist. 

My mom is 82.  She was diagnosed with MM in March of 2006. We were told she had the most aggresive form of MM (IgA). They started her on Thalidomide 50 mg because of her age, but it was still too much for her, so they switched her to Melphalan and Predinosa. She was on this combination for 6 weeks, from August 2006 until October 2006. The results were not as expected, so her doctor in Texas decided to try a more aggresive treatment (Velcade and Doxorubicin, with Dexametasone). She started with this treatment in October 2006. 

In January 2007 she came to live with me in Sacramento, CA. Her doctor here continued with the Velcade, Doxoribicin, Desametasone combination.  And my mom seemed to be responding to this treatment. The protein of the Myeloma decreased and by May, the doctor gave her 3 months of a break from treatment.  Unfortunately, by August 2007 the numbers had increased again so they started her with Revlimid. Her initial response to this treatment seemed good, but it didn't last. By December the MM numbers had gone up again, so she was switched to Cyclophosphamide 500 mg once per week. This treatment has been too strong for her; and she has had a transfusion every two weeks; so her doctor decided to reduced the dose to 250 mg.

I'm not sure this treatment is working.  The little lumps she has in her legs (an now also in one of her eye lids) are still there, and it seems she is getting more. 

 So, she is already on her 4th treatment. Unfortunately, so far none of the treatments seemed to have worked as expected. Or, when they worked, they do for a few months.  We know that there is not cure for this illness, but we had hoped that the benefits of one of the treatments would last a little longer.

That has not happened, and she has been getting weaker and weaker. After using the  (Velcade and Doxorubicin, with Dexametasone) she became very weak and the neuropathy was bad in in her legs; but she seemed to recover a lot with some therapy and Gabapentin. However, the improvement stopped, and although she is not doing as bad as then, her legs never recovered completely and seem to be losing strength again.

Does any one have any ideas as to what other options of treatment are out there?  We know she has had almost all of the most recently approved treatments. But, do you know if it's possible to retry any of them or in a new combination?

I don't want to think that we are out of choices.

I would appreciate any information or suggestions.

 Maria

 

 

.  

On 1/19/2008 coquis wrote:

Hi Craig,

Yes, I have seen several of the people in this site mentioned this 3-way combo of Vel/Rev/Dex, so I'm ready to ask my mom's doctor this coming Wednesday.

 But, is it possible to get approval for that combination, when my mom has already been on Vel and Rev on different treatments?  I know this is a question for the insurance company, which is an issue that worries me.  So far, the insurance has approved everything the doctor has recommended; but you never know when they will start complaining.

Another issue is that most of the people who post information on this site mentioned their M-protein of concern is the IgG.  My mom's is the IgA, so I don't know if that makes a difference. For what I've read, the treatments are the same, but I guess the response to treatments may be different.

How do you go about clinical trials?  The doctors refer you to them, or you go ahead and contact the researchers yourself? 

Anyhow, thanks for your suggestions.

All the best to you and your family,

Maria 

 

Good Evening Maria;

The following should clarify your concern of IGG's and IGA's:

 Immunoglobulins

An immunoglobulins test is done to measure the level of immunoglobulins, also known as antibodies, in your blood.

Antibodies are substances made by the body's immune system in response to bacteria, viruses, fungus, animal dander, or cancer cells. Antibodies attach to the foreign substances so the immune system can destroy them. See an illustration of the immune system.

Antibodies are specific to each type of foreign substance. For example, antibodies made in response to a tuberculosis infection attach only to tuberculosis bacteria. Antibodies also work in allergic reactions. Occasionally antibodies may be made against your own tissues. This is called an autoimmune disease.

If your immune system makes low levels of antibodies, you may have a higher chance of developing repeated infections. You can be born with an immune system that makes low levels of antibodies, or your system may make low levels of antibodies in response to certain diseases, such as cancer.

The five major types of antibodies are:

"So far, the insurance has approved everything the doctor has recommended; but you never know when they will start complaining."

I don't entirely agree with your above statement. The insurance company is not going to second guess your Dr.'s medical opinion. Unless of course he prescribes some bizarre treatment. But they will not risk a lawsuit by denying you medically prescribed treatment. Believe me, they complain anytime they have to open their coffers! You must convince the Dr. of your intentions. Support it with facts.

How do you go about clinical trials? 

In my case, I was offered the opportunity to participate in a trial based on  the parameters the pharmacuetical company established for testing their product. Keep in mind, I signed a release prohibiting me from sueing them for any harm I may encounter and also would not be compensated in any manner. My Dr. offered this to me. But I have found in my research where they look for volunteers who fit the parameters of the study.

Take care;

Kevin

On 1/20/2008 photog wrote:

I am not sure about the criteria for Vel/Rev/Dex, but definitely bring it up with the Dr. It could be that the combo works differently together than separately so she still might be a candidate.

As for clinical trials I believe you can apply yourself, but would probably need her medical records sent to the researchers. You'll have to carefully read through the requirements. Most are for relapse or unresponsive cases like your mother, so she would stand a good chance of acceptance.

Please keep us posted.

Best regards to all of you.

Craig 

Hi Craig,

I read through the requirements for the clinical trials, so I'm ready to ask the doctor about this and the Vel/Rev/Dex combo.

Thanks!

Warm regards to you and your family. 

 Maria

Hi Kevin,

Thank you for that great explanation about the different types of antibodies. 

Are the different types of antibodies related in any way to the aggressiveness of the MM?

Your comments about how insurance companies proceed regarding treatments make me feel better. That's why I like this site: people help sort out all that information out there and provide links for more useful information. So, when we go talk to the doctors, our questions are more to the point. 

I have checked the site Craig mentioned earlier, so I will be asking my mom's doctor about clinical trials during our next appointment. 

 Thanks again!

María