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Mother with multiple myeloma in Jakarta

by mmjakarta on Sat Nov 07, 2015 4:39 pm

Hi,

So grateful to find this forum. Multiple myeloma is still pretty uncommon type of cancer in Indonesia and between trust the local doctor vs learn from people in this forum :)

My mother is 58 years old. Her MRI and bone survey result shows that fractures between vertebra t12 until l5. Did massive spine surgery to stabilize it on August and she walks perfectly now.

Series of test PET scan, SPEP, serum free light chain confirms multiple myeloma existence

SPEP:

Albumin 53.7 (L)
a-1 globulin 5.5 (H)
a-2 globulin 12.3 (H)
b-1 globulin 6.8
b-2 globulin 6.1
y-globulin 15.6

Serum Free Light Chain:

Kappa 1,528 (H)
Lambda 23.87
Ratio kappa / lambda 64.01 (H)

B2-microglobulin 3.90

I wonder what is my mother's cancer stage and how long usually she has?

Doctors just gave her dexamethasone for 5 days and Bonefos (clodronate) infusion every week. After 12 days since using dex, her free light chain increase slightly. Currently with prednisone.

Next, doctor suggest her for Velcade infusion every week, it will cost us around 1500 USD per week and will need to do it for 4 months.

My question is: Do people need to jump straight to Velcade, or can try thalidomide first?

Bit lost, will be grateful with more information. We will meet other doctor for second opinion on next treatment too.

Thanks.

mmjakarta
Name: MMJakarta
Who do you know with myeloma?: Mother
When were you/they diagnosed?: August 2015
Age at diagnosis: 58

Re: Mother with multiple myeloma in Jakarta

by Little Monkey on Sat Nov 07, 2015 5:26 pm

Hi mmjakarta,

Velcade is a first line treatment here in Canada, but each country if different.

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: Mother with multiple myeloma in Jakarta

by Multibilly on Sat Nov 07, 2015 7:35 pm

Hi Mmjakarta,

Welcome to the forum. I'm sorry to hear about your mom.

Thalidomide and Velcade (bortezomib) are very different drugs. Thalidomide was one of the first breakthrough drugs for treating multiple myeloma and is known as a IMiD. In several parts of the world including the USA, it has been replaced by a newer IMiD known as Revlimid (lenalidomide), which has less side effects than thalidomide. Thalidomide works fairly well with many patients, but it can often cause pretty serious peripheral neuropathy (nerve damage) - and this damage can often be permanent. Velcade is what is known as a proteasome inhibitor and it can also cause peripheral neuropathy, but it is often less severe and less common than what patients experience with thalidomide.

Depending on whether the patient is considering a transplant or not, a patient can start off with just about every combination of an IMiD, proteasome inhibitor, steroid and some other classes of drugs such as alkylators, etc.

Understanding your mom's cytogenetics (genetic mutations) with a bone marrow test can also help guide the best possible choice for a front line drug combination.

This chart (link) will give you an idea of some of the more typical combinations of drugs used with multiple myeloma patients in different situations and stages of their treatment (note that some of the drugs mentioned in this chart may not yet be available in Indonesia).

I'm guessing that you are asking about potentially using thalidomide as the front line treatment because it might be considerably less expensive than Velcade in Indonesia? Thalidomide is certainly an option, but it would be good to discuss all the options available to your mom, including the side effects and tradeoffs for each drug ... and whether you can afford each of the combinations.

A doctor is best suited to guide you through these discussions and decisions, but folks on the forum can provide some additional advice as you go through this process. Hope this helps a bit.

BTW, the SPEP should also mention something like an abnormal protein band, paraprotein, monoclonal protein, etc. Do you find any mention of that on the SPEP test?

Also, Bonefos is a bisphosponate that is usually only prescribed to multiple myeloma patients that can't come into a hospital. In general, other IV-delivered bisphosphonates such as zoledronic acid (Zometa) or pamidronate (Aredia) are the recommended bisphosphonates for treating multiple myeloma (related article).

Lastly (and maybe most importantly), do not use IV infusion for Velcade administration. Using the exact same same version of the Velcade drug from the hospital's pharmacy, a nurse can instead deliver Velcade via subcutaneous injections (usually in the abdomen or thighs). This greatly reduces the chance of developing peripheral neuropathy.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Mother with multiple myeloma in Jakarta

by mmjakarta on Sun Nov 08, 2015 5:47 am

Thanks Little Monkey and Multibilly.

Dear Multibilly,

Thanks so much for your comprehensive reply.

We will do cytogenetics on Monday. However, sadly it will take the hospital 2 months to get result in Indonesia.

SPEP test shows gammopathy monoclonal kappa light chain, I think I believe this is multiple myeloma kappa light chain?

For Bonefos vs Zometa, I have read that Zometa has greater side effects to (lock jaw), I will have to check with doctor for this option. Doctor have not suggest any option to Zometa, but glad I know this forum so I learn more options :)

I will check if Velcade injection is an option as well. Otherwise, may need take my mom overseas for injections vs infusion, I see multiple myeloma patient in Indonesia treated by infusion and doctor suggested for infusion. Velcade IV dosage local doctor here suggested is 5 mg (it will need 1 and half box) and infusion every week for 16 weeks / 4 months cycle. However I check Velcade.com website the dosage and treatment schedule is different which make me questioning the doctor we dealing with now.

Will get second local doctor and discuss about dosage and schedule. Seems Velcade is way to go now, luckily mom have save quite amount of money during her worktime and we now focus for best option for treatment with less side effect.

mmjakarta
Name: MMJakarta
Who do you know with myeloma?: Mother
When were you/they diagnosed?: August 2015
Age at diagnosis: 58

Re: Mother with multiple myeloma in Jakarta

by Multibilly on Sun Nov 08, 2015 7:51 am

Glad to help.

You might want to show this document to the doctor regarding Velcade administration.

While subcutaneous injection might be a different way for your hosptial to administer Velcade, I can't think of a reason why a nurse shouldn't be able to administer it this way (they already know how to do this with other drugs). Your doctor may simply not be aware of this study and the above recommendation by the manufacturer of Velcade. I'm thinking that if you show the doctor this document, you shouldn't have to go overseas just to get subcutaneous injections.

If you do decide to proceed with Velcade subcutaneous injections, there is also a simple trick that people use to minimize rashes and itching that develop round the injection site. You may want to show this to the nurse when time comes (there are instructions for a nurse further down in the thread).

"Subcutaneous Velcade - "air bubble" technique" (forum disc. started Mar 12, 2015)

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Mother with multiple myeloma in Jakarta

by mmjakarta on Sun Nov 08, 2015 8:13 am

Great tips and info Multibilly,

I hope they have injection version of Velcade in Indonesia (I will find out tomorrow).

Glad to know about "air bubble" technique, even though not sure it is something easy or familiar to explain to the nurse here. Either way, worth to try to explain.

mmjakarta
Name: MMJakarta
Who do you know with myeloma?: Mother
When were you/they diagnosed?: August 2015
Age at diagnosis: 58

Re: Mother with multiple myeloma in Jakarta

by TerryH on Sun Nov 08, 2015 9:12 am

Welcome to the forum, MMJ.

Multibilly has been very generous and thorough in the advice he's given you so far. He is really an excellent resource. So I don't have a lot to add. There are just a few points I'd like to have kept in mind during this discussion.

One is that, if you mother is going to take a limited number of Velcade treatment cycles due, for example, to the drug's cost, your doctor's advice to give Velcade by infusion may make sense. Subcutaneously injecting Velcade definitely lowers how often patients experience peripheral neuropathy when treated with the drug, and this is especially important in countries like the U.S., where doctors frequently give the drug for an extended number of treatment cycles -- sometimes even continuously, without interruption, as maintenance therapy.

But there is evidence that, particularly when Velcade is given for a limited number of treatment cycles, giving the drug by infusion can lead to deeper responses. This is discussed in an article here at the Beacon earlier this year,

"Subcutaneous Velcade Leads To Similar Response Rates, But Fewer Side Effects, Compared To IV Velcade In Newly Diagnosed Multiple Myeloma," The Myeloma Beacon, Apr 20, 2015

I'm not saying that giving Velcade by infusion is definitely the way to go. I just don't think it should be automatically disregarded as an option.

Also, I think as all of us here think of potential treatment options for your mother, we need to remember the reality that many treatments that are commonly used here in the U.S. – such as Revlimid, Velcade, Kyprolis, and Pomalyst – are either VERY expensive in relation to people's ability to pay, or not even approved, in countries such as Indonesia.

This means it's important to remember older drugs, such as thalidomide (which is cheap, I believe, in countries such as Indonesia), melphalan, doxorubicin, vincristine, dexamethasone, prednisone, cyclophosphamide, etoposide, and even interferon and potentially quinine (!) as treatment options in cases like this.

The key to helping MMJ's mother live as long as possible, and with as good a quality of life, is to come up with a planned sequence of as many different treatments as possible. The treatments can be for now, or for the future, and they need to be feasible.

If you go the Velcade route, MMJ, your mother's doctor may wish to consider Velcade, cyclophosphamide, and dexamethasone (VCD, or "CyBorD") as a combination to use. It is very commonly used in many countries, including the U.S.

If, as it seems may be the case, dexamethasone is not proving very effective, then another Velcade-based option to consider would be Velcade, melphalan, and prednisone (VMP), which also is commonly used in many countries.

If your mother does not get a deep response to her initial treatment regimen, her doctors may wish to consider giving her some consolidation therapy, to further deepen her response. Low-dose prednisone or dexamethasone may be an option for maintenance therapy.

I have not written this with the intention that it be seen as the final word on what treatment your mother should get now...or in the future. I just want to stimulate all of us here to think as openly as possible about the best options for your mother, while recognizing the limitations that may exist.

One final note: If Zometa is expensive in Indonesia, or if you are hesitant to use it, Aredia (pamidronate) is an alternative that is commonly used in the U.S. and other countries. It should be cheap in Indonesia.

Good luck!

TerryH

Re: Mother with multiple myeloma in Jakarta

by TerryH on Sun Nov 08, 2015 9:27 am

One quick follow-up: I checked to see if there are any clinical trials for multiple myeloma patients in Indonesia. Unfortunately, there are not, at least according to these results at clinicaltrials.gov.

It is possible, however, that there may be trials in Jakarta that are not listed in clinicaltrials.gov. I don't know how you could find this out, MMJ, but it is worth checking.

However, this is always an option those of us here in the forum should keep in mind when dealing with these sorts of situations.

TerryH

Re: Mother with multiple myeloma in Jakarta

by mmjakarta on Sun Nov 08, 2015 10:14 am

Thanks TerryH,

I am not sure if there is different cycle between Velcade subcutaneous and IV.

I have checked this page to guide me with dosage and treatment schedule and found out that our local doctor suggested a dosage i.e (5 mg using 1.5 vial of Velcade IV instead just 1 vial) and cycle/schedule that is different. I will have to consult with him the reason he suggested differently than the company suggestion.

Thalidomide definitely way cheaper option as next step, but more concern on side effect than price.

mmjakarta
Name: MMJakarta
Who do you know with myeloma?: Mother
When were you/they diagnosed?: August 2015
Age at diagnosis: 58

Re: Mother with multiple myeloma in Jakarta

by Multibilly on Sun Nov 08, 2015 10:36 am

Terry makes some good points about PN wrt the number of cycles of Velcade. This is a follow up paper to the article she referenced that will be delivered at an upcoming ASH conference:

M Merz et al, "Clinical Risk Factors for Peripheral Neuropathy in Patients Treated with Subcutaneous or Intravenous Bortezomib for Newly Diagnosed Multiple Myeloma," ASH 2015 Annual Meeting abstract 4233 (text of abstract)

It is also certainly worth discussing the Velcade treatment cycle frequency with your doctor. The initial frequency for Velcade administration is usually on days 1, 4, 8, 11, etc, regardless of what drug you might pair it with. Weekly Velcade schedules are usually only used after treatment for a few cycles or with maintenance treatment.

However, there was this study

"Once-Weekly Velcade Is Equally Effective But Better Tolerated In Elderly Multiple Myeloma Patients," The Myeloma Beacon, Sep 28, 2010

that was done with weekly Velcade dosing in the elderly, so perhaps this is what your doctor is considering when it comes to a dosing schedule?

Others on the forum also might have some experience with initial weekly administration of Velcade?

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

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