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Husband with 17p deletion

by HHH on Tue Sep 23, 2014 12:49 am

My husband's 2014 New Year's Resolution was to take off some weight. The weight was pouring off. He was having some back pain, but over the years has had back pain occasionally. His PCP gave him a 7-day course of prednisone and the pain went away. He was doing fine.

Then in the spring he injured his back while working on the house. He went to an orthopedic clinic. They did an MRI that identified "bone marrow abnormalities". Multiple myeloma, stage III, with 17p deletion, was eventually confirmed. By this time, the back pain was excruciating. He started treatment with Velcade, Revlimid, and dexamethasone (VRD) in mid-June and got pretty good pain relief.

In mid-July he had a bowel perforation. He had an emergency bowel resection and colostomy. Cancer treatment had to stop to allow him to heal from surgery. In the meantime, the myeloma came raging back.

VRD was restarted in mid-August. (His Velcade is injected weekly, dex is 40 mg weekly, Revlimid is 25 mg nightly for two weeks, then one week off.) But he was so weakened by the abdominal surgery, he has a hole to dig out of. He has continued to lose weight. Pain seems to be better in his back, but then it will get worse in his leg. He has been hospitalized twice for blood transfusions.

Is what he is experiencing common? And can anyone with 17p deletion share a success story with me?

HHH
Name: HHH
Who do you know with myeloma?: husband
When were you/they diagnosed?: June 2014
Age at diagnosis: 60

Re: Husband with 17p deletion

by Multibilly on Tue Sep 23, 2014 7:54 am

HHH,

So sorry to hear about your husband.

You will hear this question a lot on this forum, but are you working with a top multiple myeloma specialist? If you let us know where you live, we can likely point you to a couple of institutions or specific docs.

Treating multiple myeloma with 17p del can be a challenge and there are drug regimens other than VRd which should be explored with a specialist, given your husband's total medical picture. This is not to say that VRd may not be a good frontline option for him, but it's good to explore the latest research on treating del 17p with a top specialist.

If it is an option for your husband, I might also suggest investigating a clinical trial with the guidance of a top multiple myeloma specialist.

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

Re: Husband with 17p deletion

by HHH on Tue Sep 23, 2014 11:09 pm

We live in the Portland, OR area. I would appreciate any rec­om­men­da­tions on specialists. Also, how do you know when to go with the standard treatment and when to try to get into a clinical trial?

This has all been pretty overwhelming.

HHH
Name: HHH
Who do you know with myeloma?: husband
When were you/they diagnosed?: June 2014
Age at diagnosis: 60

Re: Husband with 17p deletion

by Beacon Staff on Wed Sep 24, 2014 4:44 am

Hi HHH,

In Portland, Dr. Emma Scott is a myeloma specialist at the Knight Cancer Center at Oregon Health & Science University. This link has more information about the myeloma-related services at that center.

Up further north of you, there are a number of myeloma specialists at the Seattle Cancer Care Alliance (SCCA) / Fred Hutchinson Cancer Research Center, including one of the Beacon's Medical Advisors, Dr. Edward Libby.

You can find more cancer centers with myeloma specialists in other nearby states at the Beacon's myeloma treatment center directory.

Beacon Staff

Re: Husband with 17p deletion

by Multibilly on Wed Sep 24, 2014 4:48 am

Regarding knowing when to do standard treatment and when to do a clinical trial, that is a subject I would discuss with a multiple myeloma specialist (or even two different ones) who is familiar with the trials. Every person with multiple myeloma is a "snowflake", so there is no set rule.

If your insurance covers out of state visits, you can also find some top specialists up in the Seattle area (including Dr. Libby, who participates on this forum, as mentioned above). Multiple myeloma specialists will often gladly coordinate with general oncologists or other specialists in different cities regarding patient treatment plans, so don't be bashful about asking about this type of an arrangement.

So, you could use a local Portland onc for routine visits and tests and just see a remote Seattle specialist once or twice a year (or whatever the appropriate frequency would be in your case). Or, you could use the Seattle specialist simply for a second opinion in addition to the Portland doc listed above.

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

Re: Husband with 17p deletion

by Kray on Sun Sep 28, 2014 3:04 pm

My husband has the 17 deletion, diagnosed March 2014 with a broken back. Started on RVD the same as your husband, while recovering from the back surgery. We had to switch chemo regimens as his multiple myeloma was not responding. We are now on Cytoxan (cyclophosphamide), Pomalyst (pomalidomide) and dex, and his numbers are going down.

He has recently started participating in the household, such as helping with dinner and minor repairs. We are still waiting to see if he can do a SCT, but right now we are finally having some quality of life. He hasn't returned to work, and he isn't driving, but the pain is manageable.

Hang in there.

Kray
Name: Kelle
Who do you know with myeloma?: Husband
When were you/they diagnosed?: 3/3/2014
Age at diagnosis: 47

Re: Husband with 17p deletion

by HHH on Tue Sep 30, 2014 2:27 am

Kray, thanks for your response. My husband got some back pain relief when the VRD was re-started in August and his numbers had been improving. But now the back pain has come back. I'm worried that the myeloma is winning.

What kind of back surgery did your husband have?

Has your husband's doctor recommended stem cell transplant?

HHH
Name: HHH
Who do you know with myeloma?: husband
When were you/they diagnosed?: June 2014
Age at diagnosis: 60

Re: Husband with 17p deletion

by Kray on Sat Oct 11, 2014 11:23 pm

My husband had a broken T11 at diagnosis. They put a metal ladder on both sides of his spine. 10 days after that surgery his pain started to increase, went back to the hospital when our meds we're not touching the pain. They put him back in the hospital and treated him for pain but kept canceling the MRI, stating the X-ray of the surgery site looked fine. He literally was almost paralyzed before they did the MRI.

MRI showed a extramedullary tumor that had grown at a rapid pace right above the surgery site causing spinal compression. He lost 20 lbs in 10 days while we waited for them to figure out what was going on. My husband was so drugged he doesn't remember anything about this time, but it was awful.

We met with the transplant doc, he recommended a SCT If we could get the percent of cancer cells in the marrow down to a reasonable number (he was at 77%). The SCT doc said the only reason he would recommend it for my husband was his age, he is 48 and otherwise healthy.
The Pomalyst, dex, and Cytoxan are working on his lambda light chains. Next step is a BMB to see if his numbers have dropped.

My husband has not decided whether he wants the SCT or to just continue with these meds. It is my understanding the meds will just quit working someday and we will have to find new meds.

Kray
Name: Kelle
Who do you know with myeloma?: Husband
When were you/they diagnosed?: 3/3/2014
Age at diagnosis: 47

Re: Husband with 17p deletion

by HHH on Fri Oct 17, 2014 12:13 am

Amazing. My husband also had x-rays when he first injured his back. They only identified "arthritis consistent with a man his age."

I hope all goes well for your husband.

My husband did proceed with the Hyper-CVAD. It was not easy and some complications arose. He is still in the hospital waiting for the WBC to increase and to make sure we are clear of the complications. Too early to know if it had any impact on the myeloma.

HHH
Name: HHH
Who do you know with myeloma?: husband
When were you/they diagnosed?: June 2014
Age at diagnosis: 60

Re: Husband with 17p deletion

by Morank on Fri Oct 31, 2014 4:14 pm

My husband was diagnosed with multiple myeloma (with 17p deletion) in December 2011 at the age of 47. He also presented with back pain and after 6 months of physical therapy and the conditioning worsening, he finally got an xray which showed compression fractures in his T10-T12 vertabrae.

He had kyphoplasty and radiation and then 2 months of VRD followed by 8 months of CyBorD then an auto SCT in January 2012. He has since been on maintenance every other week Velcade. He has never reached a complete response as his m-spike likes to be at 0.5 ish (0.5 g/dL), but with the 17p deletion and the prognosis with that, we are happy with stable.

We live in Hillsboro and he did do his SCT at OHSU (never met Dr. Scott; he had Dr. Chen), but Dr. Chen worked in conjunction with our regular oncologist (we have Kaiser) and with a specialist up in Seattle.

So while we have not been around terribly long (very hard to find 17p deletion patients that are), it has been almost 3 years since diagnosis and my husband still works full time, helps coach our son's basketball team, and is able to bike and run, etc. He just gets tired more easily and has to rest more often.

Morank
Name: Kim and Jeff
Who do you know with myeloma?: Spouse- Jeff
When were you/they diagnosed?: Dec. 2011
Age at diagnosis: 47

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