[AngeliqueDubai]

Should my mother discontinue treatment?

by AngeliqueDubai on Mon Oct 09, 2017 12:18 pm

Hello,

I am glad to have found this website and I hope you can help me in this difficult decision we need to make.

My mother was diagnosed with active myeloma in September of 2015 at the age of 66. She is IgA and was classified high risk after a bone marrow biopsy was made which also showed over 50% involvement. Her monoclonal protein levels were at 50 g/L (5 g/dL).

She did not want to go for a transplant and the doctors did not necessarily encourage it here in Dubai.

She was first treated with Revlimid and dexamethasone, which gave good results and took her M-spike down to around 10 g/L (1 g/dL).

A few months later, the treatment started failing, and she switched to a new treatment regimen, Velcade in combination with cyclophosphamide and dexamethasone. That treatment brought her M-spike down to 0 and we had great hopes.

However, the treatment failed in May 2017 and she had a large bone lesion with excruciating pain in the hip. She underwent 10 sessions of radiotherapy, which relieved her pain.

The doctors first switched to Pomalyst (pomalidomide) and dexamethasone. Unfortunately, in August they found extramedullary plasmacytomas in her breast. So they added the new Darzalex (dara­tu­mu­mab), hoping that this triple combo would work.

Sadly, in October this year, they found numerous new plasmacytomas (near stomach, back, etc).

So the doctors are now asking her to make a choice among the following:

• Either go for a regular strong chemotherapy regimen once every 3 weeks. The doctors say this can help reduce the tumours but are uncertain if it is worth it due to the aggressiveness of the illness and the fact that all previous treatments have failed.
• Or the second option is to stop all treatments and just take 50 mg of cyclophos­phamide every other day with some prednisone. This solution is the one they offer if she wishes to discontinue treatments and try to enjoy the time she has left.

I have a mixed feelings and believe that the second option will let her die quickly, but on the other hand we are afraid that the first option will be very hard on her physically and will not necessarily improve her condition. I have read that regular chemo can solve the matter in regards to the tumours.

Do you think the chemotherapy option can still work in her case or should we consider dis­con­tinuing and going for the second option?

Kind regards,

AngeliqueDubai

[Ron Harvot]

Re: Should my mother discontinue treatment?

by Ron Harvot on Mon Oct 09, 2017 5:42 pm

I am so sorry to hear that your mother has relapsed. There are a number of new drugs that have shown great promise when others have failed. The newer drugs Empliciti and Darzalex come to mind. They work best when combined with drugs she has already had such as Revlimid and Velcade. Also I did not hear you mention Kyprolis which works similar to Velcade. I also don't know if these drugs are available in Dubai. You might ask her doctors about them and their thoughts on trying them.

[Jonah]

Re: Should my mother discontinue treatment?

by Jonah on Mon Oct 09, 2017 5:50 pm

Hello Angelique,

Like Ron, I'm sorry to hear about the challenges your mother and your family are facing.

You write that one of the options under consideration is a "regular strong chemotherapy regimen". It's very difficult to give you any feedback about the options without knowing exactly what that "regular strong chemotherapy regimen" is. Perhaps you could find out more details about it and get back to us with that information, and we can then give you more specific feedback.

I would note that cyclophosphamide and prednisone can sometimes be an effective treatment regimen. There was one study, for example, with relapsed myeloma patients comparing Kyprolis to steroid-based treatment. Many of the patients who got the steroid (prednisone or dexamethasone) treatment also were given cyclophosphamide, and they did just as well as those who were treated with Kyprolis. See this news article for more information:

https://myelomabeacon.org/news/2014/08/17/kyprolis-focus-trial-top-line-results/

Best wishes,
J

[Terrij]

Re: Should my mother discontinue treatment?

by Terrij on Mon Oct 09, 2017 7:59 pm

Have they suggested radiation for the plasmacytomas? My daughter had one by her eye and did radiation treatment, which took it away. She later had one on her spine, but radiation did not help with that one. She did 2 rounds of DCEP high-dose chemotherapy. It did not work and made her so sick.

[AngeliqueDubai]

Re: Should my mother discontinue treatment?

by AngeliqueDubai on Tue Oct 10, 2017 12:43 pm

Dear all,

Thank you for your replies.

The chemo regimen that is being offered to my mother is the following: CHOP-VP16 (without oncovin), which is cyclophosphamide, doxorubicin, Vepeside (etoposide, VP16), methyl­pred­niso­lone.

It is to my understanding that this is pretty strong and therefore I am wondering if it can help or, to the contrary, just make her sick, as Terrij stated regarding his daughter.

Is it worth giving it a try?

Ron - Empliciti is not yet available here. As for Kyprolis, the doctor said that since she did not respond to Velcade it is unlikely that she will respond to Kyprolis either. He also mentioned that he believes it may not be strong enough considering her disease being so aggressive.

Jonah - The chemo regimen is CHOP-VP16, which is cyclophosphamide, doxorubicin, Vepeside (etoposide), and methyl­prednisolone. As for the cyclophosphamide on its own, my only concern is that she has already taken it in the CyBorD treatment, thus making it perhaps less likely to work a second time since CyBorD ended up failing.

Terrij - I am sorry to hear about your daughter. May I ask what solution was offered to your daughter after the radiation and high-dose chemo failed? As for my mother, they seem to have excluded radiation due to the fact that there are numerous tumours and their locations are difficult to deal with.

Basically, our only option today is to either treat with the above chemo regimen or let go.

Any thoughts would be very helpful.

Thanks,

Angelique

[Nancy Shamanna]

Re: Should my mother discontinue treatment?

by Nancy Shamanna on Tue Oct 10, 2017 5:05 pm

Hello Angelique, I am sorry to hear about your mother. She is very fortunate however, to have such a concerned daughter looking after her.

I know it is difficult to transfer treatment ideas from one country to another. I live in Canada and not all of the newer chemotherapies are funded here, although sometimes one can get them through private drug plans, special access from the drug companies, or from clinical trials. So sometimes there is a way to get drugs.

I have learned that although Kyprolis (carfilzomib) and Velcade (bortezomib) are both in the drug class of proteasome inhibitors (PI's), Kyprolis is known as an 'irreversible' PI, whereas Velcade is 'reversible'. This is supposed to make Kyprolis more effective than Velcade, as I understand it.

I realize from reading your initial posting that she has tried quite a few of the novel agent drugs...Revlimid, Pomalyst and Darzalex. Were they tried in combinations or singly (sorry if I missed this info.) Sometimes a combination of drugs, plus dexamethasone, works better than a drug on it's own.

I hope that your mother is not in a lot of pain or suffering, and that you and the doctors can help her with her myeloma.

[NStewart]

Re: Should my mother discontinue treatment?

by NStewart on Wed Oct 11, 2017 5:05 pm

I know that you stated that Empliciti isn't available in your country, but you might try to get it from the drug company. A friend of mine with myeloma developed plasmacytomas in one of her breasts while on Velcade and dex. She had radiation, which seemed to get rid of the plasmacytomas, but then they returned again within a few months. Then Darzalex was tried, but the plasmacytomas kept growing. She finally had a mastectomy on that breast and things seemed fine for a few months. Then the plasmacytomas returned.

The next regimen that was tried was Empliciti and Kyprolis. This is working. The plasmacytomas shrank and disappeared. As Nancy said in her post, although Velcade and Kyprolis are both proteasome inhibitors, they are enough different that they aren't completely equivalent in their effect.

I hope that you are able to make the best decision with your mother and her oncologist as to the route to take at this point.

Nancy in Phila

[Mark Pouley]

Re: Should my mother discontinue treatment?

by Mark Pouley on Thu Oct 12, 2017 6:47 pm

I question your doctor’s statement about Kyprolis. I was initially treated with Velcade (and other medications) and did not respond well. My doctor quickly changed me to Kyprolis, Pomalyst, and dex (KPD) and have had very good response. I'm not saying it will work for your mother, but I don't think it is true to conclude that poor response to Velcade excludes Kyprolis. I think the published research supports my position.

[AngeliqueDubai]

Re: Should my mother discontinue treatment?

by AngeliqueDubai on Tue Oct 17, 2017 3:08 pm

Dear all,

My main concern is to know what I should do today as I only have the choice between doing nothing (just some cyclophosphamide 50 mg every other day with prednisone) or go for CHOP-VP16 (without Oncovin), which is cyclophosphamide, doxorubicin, Vepeside (etoposide), and methylprednisolone.

The doctor also offered to go for some other similar chemo regimen (I forgot the name, but it is a more traditional chemo like melphalan).

As a recap, my mother has already been treated with:

1) Revlimid + dexamethasone
2) CyBorD (Velcade in combination with cyclophosphamide and dexamethasone)
3) pomalidomide + Darzalex + dexamethasone

We do not have Kyprolis yet nor Empliciti here.

What would you recommend we do? I see my mother's physical state deteriorating by the day and I am extremely worried. She is becoming more and more dependent and is losing weight. I am starting to worry about her survival time in the current state of things

Any advice or thoughts would be most welcome.

Thanks,

Angelique

[Jonah]

Re: Should my mother discontinue treatment?

by Jonah on Tue Oct 17, 2017 10:51 pm

Hello Angelique,

What your mother's doctors are proposing as the "treatment" alternative for your mother is a vari­ation of the "PACE" regimen that has been used for both newly diagnosed and relapsed myeloma patients. This regimen consists of

- P: cisplatin (Platinol)
- A: doxorubicin (Adriamycin)
- C: cyclophosphamide (Cytoxan)
- E: etoposide (Vepesin, VP16)

For myeloma patients, you often see the PACE regimen combined with one, two, or three other myeloma therapies, such as

- Dexamethasone (D-PACE)
- Thalidomide + dex (TD-PACE)
- Velcade + thalidomide + dex (VTD-PACE)

I don't really feel comfortable recommending to you what you should do. Instead, I think you have to ask your mother's doctors what sort of remaining survival time and quality of life during that remaining time your mother can expect with each of the options open to her. It will be difficult for her doctors to give you definitive estimates for the different options, but it really is their responsibility to provide you with such information to help with your decision making.

Here are some things to consider.

One important consideration is that your mother has stopped responding to a three-drug regimen that includes Darzalex. Such regimens are generally very effective; Darzalex is a powerful anti-myeloma therapy by itself, and even more so when combined with other drugs. Given this, and the previous treatments your mother has had, it appears that her myeloma has become rather difficult to treat.

At the same time, it's worth noting that your mother has not yet been treated with one of the other very powerful anti-myeloma therapies: melphalan. This makes me think it would be useful to consider a treatment for your mother that includes melphalan.

For example, you might want to ask your mother's doctors how they feel about doing something like melphalan, prednisone, and perhaps thalidomide (MP, or MPT), perhaps in combination with PACE. It's true that melphalan and cyclophosphamide are similar drugs, just as Revlimid, Pomalyst, and thalidomide are similar drugs, but it would seem strange to me not to try some sort of melphalan-based regimen in your mother's case, and the thalidomide might still have an effect even though your mother has already been treated with Revlimid and Pomalyst.

Good luck, Angelique. I know that the situation for you and your family is difficult. I hope you are able to find a solution that you are comfortable with.