Clinical research study

MM (Multiple Myeloma)
MDS (Myelodysplastic Syndrome)

Patients & Caregivers

Clinical research study on a newly launched medical product. The purpose is to gain insight and gather opinions from patients and their caregivers that are diagnosed with MM or MDS. It is not necessary to be taking medications to participate. All information is completely confidential and used for research purposes only.

In person 45-50 minute interview

Locations & Dates -Philadelphia, PA – 5/10,5/11,5/12

Fort Lauderdale, FL – 5/14,5/15

Phoenix, AZ – 5/16, 5/17, 5/18

Participants receive $150 cash.

Please contact to schedule or ask questions.

Jan Mallery-Groom RN
Project Manager
212-217-0407 / 201-284-8201
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Shaved my head

When my hair started to fall out I prevented a big mess by shaving my head. For men in SoCal a completely bald head is a fashion statement, so I never felt out of place. However, my sons and grandson decided to make sure I was OK with being bald: they went and shaved their heads too!

I quickly found out that a nice soft wool beret was the most comfortable way of keeping my head warm. Since it was winter I took to sleeping with it on. I also had a stylish Safari style straw hat that served well in sunny weather, but the beret was the best.

When my hair came back in it was the same wavy medium brown as before, with just enough gray at the temples to prove I don’t dye it. My old HS classmates are mostly all gray or bald and seem to be jealous. My family doesn’t go gray much. My Mom didn’t have much gray until she was 85.

My Sis had treatment for Hodgkin’s and lost her hair. It had been dark brown and very wavy. It came back black and quite curly.


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My teenage kids thought I looked pretty cool

I’m with Gail on the wigs – I got a beautiful wig before my hair loss from a special salon that deals with cancer patients – never wore it! Luckily, my insurance paid for it – it was several hundred dollars. It just looked too artificial to me and scarves, hats, baseball caps were more comfortable . I lost my hair in Jan and by June I felt it was long enough to go without a head cover (plus it was getting too warm for scarves in June) – my teenage kids thought I looked pretty cool with my hair spiked up!

But it was cold in the winter – I even had a very comfortable hat to sleep in – could not believe how cold my head would get at night – so be prepared for that.

I also had my hair come in thick and very curly – and almost jet black ! I had shoulder length baby fine straight hair my whole life – light brown to blonde in color – I always had to pay for body waves. Now I love my new hair and keep it short – although it has lightened to dark brown and is not as curley as at first.

So many people didn’t recognize me at first – always doing double takes before they realized who I was – it was very funny. I sure don’t look like my drivers license anymore!

Good luck!


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A different story about hair

Okay, here’s a different story about hair….Mine did the Malphalan Wallop too and the falling out was so odd….I really didn’t know what would happen of course, so I tried to baby what I had (falls out over a few days, rather quickly)….and before it was ALL gone, I had these wisps that made me look like Yoda. Kinda silly and made me laugh. fast forward to the grow-back.

I originally had dull blonde naturally wavey hair, very thick. My hair started back in with gun-metal grey and great body, shaped to my head and looked awesome! Then as it grew it became curly curly curly, and I loved that too! It is about a year later, my hair is now back to its original color (forgot to mention the gray), very thick (maybe even thicker than before) and back to its regular ol’ color.

I did wear kerchieves and a friend made me some chemo caps (knitted out of the softest yarn) which became my favorite headress. They feel so comforting, and I wore them to bed and any other time my head got cold….around the house. My sis and I were bald simultaneously, so we had a great trade-thing going on; she bought alot of hats from that cancer hat magazine, but didn’t wear too many. The wraps that are soft and pretty were our favorites! SIDE NOTE: if your drivers license needs renewing, do it before your hair is gone)

Anyhow, by the end of the baldness, I was getting pretty darned comfy going out bareheaded and I thought I looked pretty darn good! Sort of badge of survival and proud of it!

Bottom line: it’s only hair, and it comes and goes and comes back and on the grand scheme of things, it’s a pretty small price to pay for the chance to have a life again! Take the whole thing with a grain of salt, laugh at yourself, do silly things ( I wore a hat with a pony tail attached to it for fun, too)…..and before you know it, it will be over and you’ll just look back and say, that wasn’t so bad.

Good luck, God bless and as my son always told me when I was at my lowest:

Keep your chin up.

(I wrote it on the wall by my bed when I was so so sick and it made me feel

encouraged every time I saw it)…..


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Unpredictable

These things are all unpredictable but can turn out very well. When I was diagnosed I had rapidly graying brown hair. After Chemo, it came in jet black, but then fairly quickly reverted to its original brown. 7 years later the grey is just starting to return. My brother, who’s 65, now has hair completely white. While I might prefer his health, he’s more annoyed about my lack of grey.