[Pauillac]

Louise Rose, 42, diagnosed in March 2017

by Pauillac on Thu Aug 03, 2017 5:55 am

Hello,

After lurking for quite long, it was time to show up and introduce ourselves.

My wife Louise Rose was diagnosed with multiple myeloma in March 2017. Since January she started getting sick and tired very very often. After a few appointments with doctor, she did a blood test. It showed anemia and a very high total protein level. The test was extended with a serum protein electrophoresis (SPEP) that clearly showed the presence of a gamma M-spike.

Her starting numbers:
ß2-microglobulin 3.5
Bone marrow 30%
M-spike : 76 g/L (7.6 g/dL)
Lambda free light chain
Pet-scan showed one lesion in the chest
MRI showed some infiltration in the spine too
She was diagnosed Stage II ISS

I will not detail here how the diagnosis has been devastating and from one day to the other com­pletely changed our way of life, as I am sure most people here already understand this. We have two girls that we are trying to protect as much as possible from all this.

She started end of March her treatment with 4 cycles of Velcade, thalidomide, and dexa­metha­sone (VTD) plus Darzalex. During cycle 2 she started having severe back pain. One morning she couldn't move anymore and got taken to the hospital in emergency. Two vertebrae had collapsed.

A few days later she got a kyphoplasty. After all this, she had to learn to walk again. She had lost lots of muscle and pain has been so intense. Doctors where scared at some point that she was refractory to her treatment regimen and that the myeloma was progressing. At the end she finished her 4 cycles of VTD + Darzalex, which only got her M-spike to 45 g/L (4.5 g/dL).

The goal has always been to do a stem cell transplant. This is scheduled for the end of August. She got her stem cells collected this week after a cyclophosphamide (Endoxan) infusion days ago.

The cyclophosphamide caused another drop in her M-spike, getting it down 35 g/L, but also put her in aplasia for a few days and she got sick with high fever (so back to hospital).

Below is an image to kind of illustrate all that.

Wish you all the best and thanks everyone here for sharing so much information. This has been very helpful for us to understand lots of things about all this.

chart3v2.png (50.98 KiB) Viewed 2076 times

[Cheryl G]

Re: Louise Rose, 42, diagnosed in March 2017

by Cheryl G on Thu Aug 03, 2017 7:37 pm

Welcome to the forum, Pauillac, and thank you for sharing your wife's myeloma story so far.

The treatment regimen your wife has received has the potential to be very powerful, given that it includes two novel myeloma agents (Velcade and thalidomide) combined with the new monoclonal antibody Darzalex. But the regimen also is rather unusual at this time. I am wondering if your wife is receiving the treatment regimen as part of a clinical trial.

I found this trial,

https://clinicaltrials.gov/ct2/show/NCT02541383

that includes patients that receive treatment exactly the same as your wife (4 cycles of VTD+Darzalex, followed by a stem cell transplant). Perhaps your wife is taking part in this trial?

Your wife's M-spike has dropped quite a bit from a high starting point. I hope that she responds well to her transplant, and to any post-transplant therapy.

Good luck, and please keep us updated on how your wife is doing.

[Pauillac]

Re: Louise Rose, 42, diagnosed in March 2017

by Pauillac on Thu Aug 03, 2017 7:55 pm

Hello Cheryl,

Yes, it is this clinical trial. Local hematologists are expecting a lot here from this combination. With in the particular case of my wife they have been overall disappointed by the result. After cycle 2 and her vertebra collapse, they almost changed the treatment regimen

Trial includes a transplant that will be coming up in a few weeks and 2 more cycles after that of VTD + Darzalex.

Given the results she got from the first 4 cycles, they are currently unsure that she will do the last 2. They might get her out of the trial and get another regimen. Will really depend how transplant will do.

Good luck to you too.

[NStewart]

Re: Louise Rose, 42, diagnosed in March 2017

by NStewart on Thu Aug 03, 2017 9:37 pm

It sounds like your wife had quite a rough start with multiple myeloma so far. I hope that the stem cell transplant offers a good reduction in her myeloma load and brings with it better health.

I've also been diagnosed with leukemia in addition to multiple myeloma, and I've been told by one person with leukemia about a book called "My Daddy Is a Leukemia Super Hero". I know it's not about multiple myeloma, but it is about how you talk with your children about a parent's cancer diagnosis. You might get it and read it to see if it would be helpful for your children.

Also, you may want to talk with the social worker at your cancer center and ask about what is available for support for your children and/or how to talk with them about your wife's cancer.

Our children are the most vulnerable in this type of situation because they don't understand what is going on and they have fears and anxieties about Mom or Dad.

All the best to your wife and your family,
Nancy in Phila

[Dimamar]

Re: Louise Rose, 42, diagnosed in March 2017

by Dimamar on Fri Aug 04, 2017 1:02 am

Hi Pauillac,

Sorry to hear about your wife. It's shocking at such a young age.

I am no expert, but a bit surprised that Velcade, Revlimid, and dexamethasone was not used as as her first treatment. Any reason Revlimid is not in the equation?

Also, my understanding is that they try to get M-protein to zero, as well as other multiple myeloma-related numbers like light chains, etc. to get stem cell harvesting?

Please stay strong, and best of luck!

[Nancy Shamanna]

Re: Louise Rose, 42, diagnosed in March 2017

by Nancy Shamanna on Fri Aug 04, 2017 9:44 am

Hello Pauillac,

I join in with the other people posting to wish your wife very good luck with her upcoming stem cell transplant. She is young and may be stronger and more resilient than an older person might be going thru intense treatments. Nancy Stewart has some good ideas as to how to approach this problem with your young children.

In answer as to why this clinical trial including Darzalex, thalidomide, Velcade and dex would be used in combination, I think that the answer is that the study locations of the trial, as posted by Cheryl G, are in the Netherlands, France, and Belgium. Thalidomide seems to be more routinely used in the European countries. Already, clinical trials of Darzalex plus dex alone, and Darzalex in combination with Velcade plus dex or Darzalex with Revlimid plus dex, have been conducted in many countries. In order for a drug combination to be approved by the health care systems in differing countries, data must be gathered to show good results on clinical trials. I don't think that Revlimid would be included since there are already clinical trials using that plus Darzalex.

I hope that helps, but more specifically , hope that your wife does better too!

[mplsterrapin]

Re: Louise Rose, 42, diagnosed in March 2017

by mplsterrapin on Fri Aug 04, 2017 11:53 am

So sorry to hear about this happening to your family. I wanted to address the part about having children since we also have kids (who were six and nineteen when my husband first became sick two and a half years ago).

While you are right that we as parents want to and should protect our children as much as possible during these difficult times, I think it's also important to be honest with them. From my experience and talking to other parents and reading about the topic, I've found that it's important to give them clear information at the level appropriate for their age, and not pretend that nothing is going on or try to hide everything. They can usually sense when adults are worried, and sometimes imagine something even worse than what is really going on.

Obviously children don't need be burdened with all the details and every little up and down, but they can usually function better if they can trust that they will be told the truth and be supported in dealing with it. Also, a lot of times their anxiety comes out sideways with acting out, and they need to be asked directly how they're feeling and what they're worried about because they don't know how to bring it up or are afraid to burden the already-stressed adults.

Honestly I think worry about how it affects the kids is even worse than the physical ramifications or caregiving responsibilities for many patients. As someone else said, many cities have support resources for families, kids, and teens that a hospital social worker could point you to.

I wish you the best and hope that your wife finds healing.

[Cheryl G]

Re: Louise Rose, 42, diagnosed in March 2017

by Cheryl G on Sat Aug 05, 2017 9:12 pm

Hello Pauillac,

There was a comment earlier in this thread suggesting that Revlimid, Velcade, and dexamethasone would be better to combine with Darzalex than thalidomide, Velcade, and dexamethasone. That really isn't something that is known at this time. Many people assume that Revlimid is more effective than thalidomide, but there have been very few studies that directly compare the two. Moreover, one study that did compare them found that there was no difference in the survival benefit of the two drugs when they were combined with melphalan and prednisone:

http://www.bloodjournal.org/content/126/11/1294.long

It is true, though, that thalidomide generally is a less desirable drug from a side effect perspective, particularly because of its tendency to cause peripheral neuropathy and fatigue.

In any case, I think it's great that your wife's doctors have her on the treatment regimen that she's getting, and I wish her the best going forward.

[Pauillac]

Re: Louise Rose, 42, diagnosed in March 2017

by Pauillac on Mon Aug 07, 2017 4:23 am

Thanks all for your kind words and support.

Dimamar wrote:

I am no expert, but a bit surprised that Velcade, Revlimid, and dexamethasone was not used as as her first treatment. Any reason Revlimid is not in the equation?

To answer questions about why thalidomide:

We are located in France and yes it is my understanding too that in Europe thalidomide is more popular than Revlimid. Of course, when we learned about the myeloma, we knew nothing about thalidomide nor Revlimid. Our hematologist presented us 2 options :

1. Four cycles of VTD, an autologous stem cell transplant, and two more cycles of VTD

(This is the current first line treatment recommended when being below 65 and in good shape)

2. The other option was to enter in the trial with a 50% chance to get Darzalex on top of the VTD.

At no point Revlimid was put on the table when we started.

I had visited few month ago this thread about comparing Thalidomide to Revlimid:

"Revlimid vs. thalidomide for newly diagnosed myeloma" (Feb 5, 2016)

It seems that roughly the efficiency is the same but side effects are different. Which kind of confirms what our hematologist told us at some point and what Cheryl G pointed out.

With regards to dealing with kids in such a circumstance, I'll look at the recommended book above. Thanks Nancy.

We have from the start taken the approach with our children to explain what is going on, with of course a level a details compatible with their age. We are lucky of having plenty of collaborative neighbors and family near us. We are always trying to prepare as much as possible our girls to what is coming next. Last episode was hair loss and next is the upcoming month at the hospital for transplant with either no or very limited kid visits. So far this approach is working apparently well. But for sure as pointed by mplsterrapin there is no way that we could hide all this to them.


Thanks for all your recommendation and help

Be well.

[Margie C]

Re: Louise Rose, 42, diagnosed in March 2017

by Margie C on Mon Aug 07, 2017 9:55 pm

I decided to shave my head about a week before my stem cell transplant. Decided I could take control over then and get used to the look. I went to my hairdresser, shaved it smooth and bald, and I had purchased a wig which she styled for me. This might help the kids get used to it also.

By the way my, 34 year old son told me I did not have the look for bald like some did, so keep on the wig. :

Wishing you the best and this website is awesome to get advice and read. I did tandem transplants and wished I had reshaved my head. I hated the fuzz coming out. I had purchased soft caps for the hospital; my head was cold.