MMSupport.net

Financial Worries Top Psychosocial Concern of Cancer Patients

MMSupport — Sat, 05 Mar 2011 05:09:42 +0000

Elsevier Global Medical News. 2011 Feb 28, B Bates
ANAHEIM, CALIF. (EGMN) -Highlighting shifting priorities after the recession, nearly half of all recent psychosocial consultations with patients at a leading cancer center involved financial worries, rather than adjustment issues or other pressing mental health concerns.
Among 313 single-episode encounters at the Cleveland Clinic’s Taussig Cancer Institute during one month in late summer 2010, 49% focused on financial issues, according to a study presented at the annual conference of the American Psychosocial Oncology Society.
These included a lack of adequate health insurance, inability to afford medications, housing crises, and/or difficulties in meeting basic financial obligations during cancer treatment, reported Christa Poole, a social worker at the institute.
“This study was a result of the [social work] team noticing a trend in increased consultation requests and interventions related to financial need,” Ms. Poole said in an interview.
Among patients’ presenting concerns were losses of benefits from layoffs, high COBRA premiums, and housing foreclosures, with these challenges often taking precedence over the more existential struggles faced by patients facing life-altering or life-threatening cancer diagnoses.
In the study, mental health distress – including coping challenges, adjustment to the diagnosis or treatment, and acute risk assessment for suicidality – constituted 37% of social work consultations, followed by other issues, including coordination of family meetings to discuss goals of care or decision making (5%), and domestic or family violence (2%).
The institute’s five social workers are now very often placed in a position of having to focus immediate attention on patients’ basic needs, while staying attuned to their depression, anxiety, grief, and changes in life roles and self-image, according to Ms. Poole.
“Cancer care, in most cases, cannot wait. These financial worries cause significant distress and when not addressed, may cause barriers to quality care,” she said.
At times, money woes are now directly impinging on medical care, she added, affecting choices patients and families make about cancer treatment regimens or symptom management. “Unfortunately, some patients choose care or treatment that will avoid debt or hardship for their loved ones,” even when those choices may affect their survival or comfort, said Ms. Poole.
“We don’t want to see patients in situations where they are choosing between paying an electric bill and paying for a drug to control nausea, when we know that patients need both.”
Financial burdens influence adherence as well, she noted: “When patients can’t afford gas or copays, they often cancel or ‘no-show’ for appointments.”
The “devastation of financial recession” has not only jolted the priorities of cancer patients, but also has taxed the institutional and external philanthropic assistance programs that once addressed such needs, said Ms. Poole.
“Resources are continuing to dwindle. Programs are simply running out of funding and are much less able to extend financial assistance,” she said. “This issue deserves continued attention and investigation, as the problem may worsen. How will hospital policies and programs respond to absorbing unpaid medical debt?”
Ms. Poole said her department continues to track trends in consultation, “as the full impact of the economic crisis continues to unfold in health care.”
Investigators reported no relevant financial disclosures.

Welcome to MMSupport!

MMSupport — Wed, 02 Mar 2011 13:21:35 +0000

This web site is dedicated to the memory of Chris Hollyer, and has been created for those of us with Multiple Myeloma, our caregivers and friends and families to use as a resource. The content is 100% contributed by members.

For many of us who suffer the incurable cancer called multiple myeloma,there was one person we turned to above all for information, guidance and wit, Chris Hollyer. MM took your life, Chris, but it will never take the patient and gentle spirit you left behind.
- Ed Gorman

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Myeloma Blogs

MMSupport — Fri, 05 Mar 2010 01:39:49 +0000

There’s a new list of a collection of myeloma blogs written by patents, friends and caregivers. If you’re a blogger and would like to see yours listed there, please follow the link on the site.

The first visit is a little slow, since the feeds all load. That takes a little while, so please be patient.

http://www.myelomablogs.org/

PN and Muscle Cramping

MMSupport — Thu, 05 Feb 2009 03:45:32 +0000

I’ve been taking thalidomide for the past 4 years, and putting up with the gradually increasing neuropathy. The sudden-onset muscle cramping, however, does get downright annoying, especially when one of my super exciting dreams is interrupted by a golf-ball sized muscle cramp hitting in the calf of one leg. An interesting question comes up: does the activity in my dreams (leaping from building to building a la Spiderman) cause the cramp, or does the onset of the cramp influence what I am dreaming? I should mention that I have always had really great dreams – now that I’m 71 years old, it’s the only real excitement that I get. LOL

I will put up with my fingers getting twisted into weird positions. That is merely annoying, especially if I am trying to hold a pen or a pencil. What really hurts though, and what I find the most distressful, is a cramp in the arch of one or both feet just before bedtime. Nothing seems to work – heat, vibration, massage, NSAIDs. For years, I have read about people using tonic water (quinine water) to treat muscle cramping, and I have always scoffed. “How can a miniscule amount of quinine possibly influence muscle cramping?” sayeth I. ” It must be in their imagination!” Well, one evening I was ready to try anything, and found a bottle of quinine water in my larder. Ice in the glass, and glug, glug. Within five minutes the cramping in the arch of my foot was GONE. I believe that my reaction was, “Son of a gun!” or something like that.

The next night, same thing: cramps start, drink a glass of tonic water, cramps stop and I get a good night’s sleep. Great dreams: no cramps in the middle of the night, either. Being skeptical, the third night, I went cold-turkey: no tonic water. At two in the morning, while climbing a hillside carrying my trusty 7mm Remington Magnum on a bear hunt, my leg knotted up with nasty cramp. Sudden-End to a really great dream.

Gentle readers, I am not one to leap to conclusions, but every night for the next 2 weeks I drank the tonic water (yes, I went to the grocery and stocked up on a generic brand, some with lime and some “straight”). No cramps. If I skipped the tonic water, I got cramps. Therefore, I must come to the conclusion that tonic (quinine) water has a miraculous ability to stop and/or prevent muscle cramping caused by long term dosage of thalidomide.

There is an additional benefit. Both my Family Physician and my VA physician advocate taking 1½ oz of spirits, or a glass of wine, before bedtime. (a little ethyl alcohol IS good for the human body). This is a marvelous excuse, then, to imbibe a vodka n’ tonic before climbing into my P-47D Thunderbolt, and zooming off to fight a bunch of Me-109′s at 25 thousand feet.

Best regards, Bob Oberle, Chantilly, VA aged 71, dx 5/02 IgG lamda stage 2A, SCT 3/03, in CR since, thalidomide q36hrs for maintenance.

Plasmaphoresis

MMSupport — Mon, 11 Feb 2008 01:15:24 +0000

In March of 2007 I was at my monthly oncologist appt for routine labs. I had previously had creatinine levels in the 0.8-1.0 range. Looking back in my records my creatinine on January 2, 2007 was 0.9. January 30th it was 1.0. February 27th it was 1.5. March 30th it jumped to 4.0. At this last level my doctor advised me he was going to admit me to the hospital.

At this time I had been on Biaxin, Revlimid and Dexamethasone for three months with not a very dramatic response. I had also received Zometa recently and had been on Ibuprofen. While in the hospital I was diagnosed with Acute Renal Failure (ARF). I was put on i.v. fluids and my chemotherapy was changed to Velcade. I also had a kidney biopsy performed which revealed I had “myeloma kidney”. My doctors call was to have me receive plasmapheresis treatments.

I first had to have a catheter inserted near my collar bone. The catheter had two lumens. One took the protein out and the other replaced it with albumin (I think Beth, I’m not 100% sure). I had five treatments, two as a hospital patient and the other three as an out-patient. It was an amazing experience. I was connected to this fairly large machine that had buttons, dials and lights along with the tubes that were connected to my catheter. The process took between 60-90 minutes. They can adjust the speed of the machine and it was necessary to do this a little at a time.

The process was painless. I do remember I was chilly during the transfer. They warmed the albumin before it was introduced to my system. They did tell me I might experience tingly sensations around my mouth but I never did.

During the process you could read, watch tv, listen to tapes or sleep. The nurse was there with me during the total procedure.

Each day I had treatment they took my labs and my creatinine continued to improve.
In September I did a SCT and my creatinine is now at 1.9.

Clinical research study

MMSupport — Tue, 01 May 2007 21:17:45 +0000

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

Shaved my head

MMSupport — Fri, 20 Oct 2006 20:18:26 +0000

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.

My teenage kids thought I looked pretty cool

MMSupport — Fri, 20 Oct 2006 20:17:28 +0000

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!

A different story about hair

MMSupport — Fri, 20 Oct 2006 20:15:06 +0000

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)…..

Unpredictable

MMSupport — Fri, 20 Oct 2006 20:13:06 +0000

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.