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Ask Arthur answers your most popular question: What is HIPEC?

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Retired pediatric surgeon and PMP patient Arthur Rettig answers your questions about Appendix Cancer and Pseudomyxoma Peritonei at PMP Pals Ask Arthur

The question I’m asked most often is, “What is HIPEC?”

Either you are a patient, relative or friend of a patient who has been diagnosed with cancer of the appendix which has spread within the abdomen. You have been told that you need surgery and that HIPEC will be a part of the operation. Many small tumors may be spread throughout the abdomen and on the surface of organs in the abdomen. They produce a mucous-like substance that is usually referred to as “mucin”. HIPEC was developed to help treat this condition.

The HIPEC procedure is usually done towards the end of the operation and involves circulating a chemotheraputic agent dissolved in a solution into the patient’s abdomen through the incision site.  HIPEC has been proven to be more effective than standard chemotherapy that is administered by infusion through a vein. Higher levels of chemotheraputic agents can be established via HIPEC than conventional chemotherapy. This is possible since the lining of the abdomen, the peritoneum, is a large absorptive surface.

HIPEC consists of placing perfusion catheters into the abdomen (the peritoneal cavity), which are very similar to those used in heart surgery. There is an inflow catheter and an outflow catheter. Heated or hyperthermic chemotherapy, (the H in HIPEC) is pumped into the abdomen through the inflow catheter and exits through the outflow catheter. The operating table is then vibrated so that the fluid can circulate throughout the abdomen. The chemotheraputic agent (the C in HIPEC) is dissolved in the fluid. The fluid is directed into the peritoneal cavity (the PE in HIPEC). The fluid is heated to 107 degrees Fahrenheit to achieve greater penetration of the chemotheraputic agent. This part of the operative procedure may take about one and a half hours.

HIPEC is usually done along with CRS, which stands for “cyto-reductive surgery”. After the patient is anesthetized, this part of the operation proceeds first and consists of removal of the sites of the tumor and mucin and may involve removal of some internal solid organs, such as the gall bladder, spleen, and part of the intestine.

After the CRS is completed, the perfusion tubes for HIPEC are placed into the patient’s abdomen and the incision is closed. Once the HIPEC perfusion is complete, the abdomen is re-opened to be certain that nothing is amiss and then the abdomen is closed. The length of the surgery is variable, depending on the amount of dissection done during the CRS. A patient’s recovery time in the hospital is variable. It depends in part on the amount of dissection done during the CRS. The more drastic the organ removal and the more intestinal work done, the longer the recovery period.

…..I hope this helps you to understand both HIPEC and CRS. In another article, I will discuss what you can expect when you go home and what you can do to hasten your recovery.

If you have questions for Arthur, visit his web page today to submit a question to him: https://pmppals.net/ask-arthur/

Please remember, although PMP Pals tries to offer hope, support and information about appendix cancer and pseudomyxoma peritonei, we’re not medical professionals and we’re not qualified to provide medical advice. Please consult with your HIPEC Specialist to develop a medical care plan.

UCSD Endorses PMP Pals!

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PMP Pals is proud to share that Dr. Lowy and the Peritoneal Surface Malignancy Program Team at UCSD have recognized the PMP Pals Network for their work in supporting appendix cancer patients and their caregivers. In their Spring Newsletter, Dr. Lowy’s team explains how PMP Pals complements their comprehensive approach to fighting cancer. The Newsletter notes “The fight against cancer is a team approach, and we want to be able to provide the best options for each of our patients.” PMP Pals is glad to be recognized along with the Patient Ambassador Program, which also does a terrific job in offering hope and support to patients who choose the team at UCSD.

Take a look at the Newsletter and you’ll find great information about our upcoming PMP Pals Annual Conference being held on October 8th & 9th in Monterey, California. We want to thank Shirley Tejidor and Lori McIntosh for thinking of us, and we hope to see you in Monterey later this year!

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Walking After HIPEC Surgery

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After surgery, get up as soon as your healthcare team recommends and as often as they allow. Generally, your nurses will help you to stand up and walk a few steps the first day after surgery, even while you are still in ICU. You may feel unsteady but this is normal and the nurses will help assist you in movement.
 
During the days following surgery, set a goal to walk a little farther each day. Begin with two steps, four steps, out the door of your room, half way down the hospital corridor, and so forth. Gradually you will walk the length of the corridor once/twice/three times! Your IV pole will become your “walking partner.”
 
Getting out of bed and walking may make a difference in your recovery time. Eventually, you will be strong enough to stroll down the corridor without a nursing assistant or family member accompanying you.

Attention Ladies! Reviving Your Sex Life after Appendix Cancer

Posted by on 3:00 am in After surgery, Life after PMP, Sex After Surgery | Comments Off on Attention Ladies! Reviving Your Sex Life after Appendix Cancer

By Dani C., Pseudomyxoma Peritonei Survivor

feet-in-bedAs a woman who has undergone HIPEC surgery for appendix cancer (AKA pseudomyxoma peritonei), I’ve faced the difficulty of getting my groove on and once again enjoying physical intimacy with my husband. It’s probably the most embarrassing issue that you need to deal with during your recovery process. You find you’re finally ready for full intimacy, but your lady parts – what’s left of them – aren’t cooperating. It’s enough to make you scream…and not in the good way!

HIPEC surgery for pseudomyxoma peritonei often includes the removal of the uterus and ovaries. Which leaves us ladies without the hormones we need for natural vaginal lubrication. Vaginal dryness sounds like a minor thing until you attempt to engage in intimacy with your partner. Ouch is putting it mildly. Lack of hormones also thins the walls of the vagina, making any friction across these thin, dry walls torture. Over-the-counter lubricants can make intercourse bearable. But, ladies, we deserve more than just “bearable.”

It is possible to have a great sex life after appendix cancer surgery. I’m four years out, and back to a completely normal sex life. So let’s look at what you can do to get things fired back up.

  1. First, talk to your partner. It takes two to tango. Your partner needs to know what you’re feeling, emotionally and physically, in order to work through this. Don’t be afraid to go into detail. He needs to know exactly how painful vaginal dryness is, but that it’s not his fault. And that it’s not your fault either. He needs to know that you really do want to have good sex again. And that together you can work through it.
  2. Talk to your gynecologist. Hormone replacement therapy or a less invasive progesterone cream can help after cytoreductive surgery for pseudomyxoma peritonei. Over-the-counter progesterone creams work fine, but it’s important for your gynecologist and HIPEC specialist to keep tabs on how much of the hormone is going into your system…too much can put you at risk for other cancers.
  3. Consider joining a support group. Women in these groups often discuss their own intimate experiences, review creams and lubricants, and share helpful tips, like which sexual positions are most comfortable.
  4. Pick up some coconut oil. One of the most popular solutions is plain ol’ coconut oil from the supermarket. It’s solid at room temperature, but quickly melts in your hands. Apply externally to whatever parts need lubrication, and voila!…a natural solution that smells good, too.
  5. Take it slow! It will be uncomfortable at first. On your first “date,” start with partial penetration and, over time, slowly increase this. It’s actually great fun; nothing like a slow tease to rev things up.
  6. Be persistent. My gynecologist explained that my vagina sort of went to sleep during the recovery period after my appendix cancer surgery…and that the more it’s used, the more it will respond. And darned if he wasn’t right!

Ladies, don’t despair. Your love life will return after appendix cancer. With time, patience, understanding…and a little coconut oil.

How to Recognize A Blood Clot

Posted by on 12:44 am in After surgery, Life after PMP | Comments Off on How to Recognize A Blood Clot

Blood clots can be a dangerous post-surgical complication.   Many of us have several risk factors for these conditions, including age, the mere presence of cancer, having abdominal surgery, and our immobility during long hospitalizations.

Deep Vein Thromboses (DVTs) are blood clots that originate in the legs.   If a blood clot breaks free and travels to the lungs it’s called a pulmonary embolism (PE), and can be fatal.  It is important to know the signs and symptoms of each of these conditions and to report them to medical personnel immediately.

Common symptoms of a DVT are swelling of one or both legs; pain or tenderness in the leg(s), sometimes only while walking or standing; redness, visible veins, or warmth in the skin of the affected leg; and leg fatigue.  Do NOT rub the leg in order to ease leg pain!  Report it and let the medical professionals deal with it.

Some symptoms of PE are sudden coughing, which may bring up blood; sharp chest pain; shortness of breath; rapid breathing; rapid heartbeat; nausea and severe lightheadedness.

If, after a few days, you continue to have trouble breathing while doing everyday tasks, be sure to report this symptom to your surgeon or to the charge nurse.

Should these symptoms arise after your discharge from the hospital, go directly to the ER where the proper tests can determine if a blood clot is present.

Don’t be afraid to be assertive!  Blood clots can be life threatening.

Focus on Physicians: Dr. Edward Levine from Wake Forest Baptist Medical Center

Posted by on 12:11 am in Life after PMP, Surgeons | Comments Off on Focus on Physicians: Dr. Edward Levine from Wake Forest Baptist Medical Center

PMP Pals serves as a source of information to patients about centers of expertise for treating PMP and appendix cancer.  In this blog, we focus on Dr. Edward Levine, a surgeon who has treated this form of cancer for 20 years.  Dr. Levine is Chief of Surgical Oncology of the Comprehensive Cancer Center at Wake Forest Baptist Medical Center, where approximately 100 surgeries with HIPEC are performed annually.  We spoke to him in January about a range of topics.

Dr. Levine has been performing HIPEC on appendix cancer patients for 20 years

Dr. Levine has been performing HIPEC for 20 years

First, we are interested in how you came to be involved in treating appendix cancer patients.

My first case was in 1996.  I became interested in focusing on this cancer because I saw that patients coming back to our clinic for check-ups were experiencing improved outcomes from the newer protocols being used – cytoreductive surgery with HIPEC.  The older forms of treatment and protocols had much shorter survival for these patients.  It was so encouraged to see this improvement in outcome that I expanded my efforts for potential HIPEC patients.

What is your longest surgery for PMP/appendix cancer? Is that your most memorable case?

My longest HIPEC was 19 hours.  The good news is that the average length of surgery is coming down – for us, it currently is 9 hours.  And, more importantly, the complication rates are coming down.  Now, nearly half the patients undergoing surgery with HIPEC do not need to spend any time in the intensive care unit.

There is no one particular case that stands out as most memorable for me. What stays with me is seeing the long-term survivors’ photos of their grandchildren, their travels, and their active hobbies like kayaking. This is what makes an impression on me – seeing my patients able to enjoy these kinds of moments.

Are you currently involved in any research trials?

Yes, at Wake Forest we have several on-going studies in different areas.  First, we have performed the largest quality of life study worldwide to date for patients undergoing HIPEC.  We are looking at more than 600 patients in this study.  We will present this study at the March 2016 meeting of the Society of Surgical Oncology.  We are following up that study with one looking at caregivers for HIPEC patients.  Additionally, we have a long term study on patient outcomes, looking at response to surgery survival after HIPEC.

We also are studying what makes tumors tick – looking at the genomics and genetics of tumor development from a scientific standpoint.  And finally, we have a first ever Phase II clinical trial looking at the chemotherapy agents used in HIPEC for appendiceal cancers.  I am serving as the principal investigator; we are working with the University of Pittsburgh and the MD Anderson Cancer Centers on this study, which is in the follow up phase now. We expect to be able to compile the results by the end of the year.

To patients I would say that even though your type of tumors is rare (only about 3,000 new cases per year), don’t feel alone.  There is active research taking place for this type of cancer. And, groups like PMP Pals provide an important source of support to patients and caregivers.

What advice do you have for patients who are approaching CRS and HIPEC treatment?

That’s a good question.  First, I would say to take time to prepare yourself well before the surgery.  Come to this treatment in the best possible shape.  By that I mean not just physiologically and nutritionally, but also your mental state and spiritual state – all of these are important. The better the shape you are in, the better the outcome.

Then, around the time of your surgery, prepare for things that will improve your quality of life in those weeks.  Get to know your surgeon, talk about what to expect, get to know the hospital you will be spending time in.  Both the patients and caregivers need to know their surroundings and their surgeon in order to keep stress in check and to take care of themselves as well as possible while going through surgery.

After surgery, your recovery is like a marathon, not a sprint.  Often it can take 3 to 6 months for full recovery, and the surgery can be life changing.  Patients need to be prepared for this and plan for adequate time and support to recover.

Let’s talk about chemotherapy. We find there is a lot of confusion about when systemic chemo is recommended for PMP tumors. Can you clarify this for patients?

For appendiceal cancer tumors of the low grade kind, with no nodal metastases, there is no evidence of benefit from systemic chemo.  For high grade tumors, based on the genetics involved, we do offer systemic chemo.  For high grade tumors, we see response rates that are similar to response rates for chemo for treating colon cancer.  These high grade tumors respond to the same drugs used for colon cancer – specifically, oxaliplatin-based chemo drug regimens (often referred to as FOLFOX) are the best first line systemic chemo treatment. By contrast, the genes in low grade tumors are very different from those in both colon cancer tumors and high grade appendiceal cancer tumors.  The low grade tumors are slow growing, and we do not see the same kind of impact from systemic chemo.

Dr. Levine, thank you for sharing your time with PMP Pals.  We appreciate all you do to treat your patients as well as to improve medical treatment of appendiceal cancer and PMP in general.

You’re welcome. Likewise, I appreciate the ongoing effort and expanding role of PMP Pals.  I have been involved with PMP Pals for many years and am glad to see the organization still here to provide support.  Finding support from a group like PMP Pals is so important to patients and caregivers.

Learn more about Dr. Levine by going to his Find a Surgeon page here or by going to his page on the Wake Forest web site here.

Practical Advice for Dealing with the Side Effects of Chemotherapy for Appendix Cancer and Pseudomyxoma Peritonei

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Systemic chemotherapy is prescribed for some patients with PMP and related cancers, either before surgery to reduce the tumor load, after treatment  to prevent recurrence, or to enhance quality of life.

There are a variety of drugs that can be prescribed; the oncologist will choose the most appropriate ones for the patient’s individual situation.  While the different drugs have their own side effects, it’s important to realize that they don’t affect all patients equally.  While one patient may experience a variety of side effects, others may have very few.  It’s essential to keep the oncologist informed of side effects, especially if they are intense, so that appropriate medicines can be added to reduce them or modifications to the treatment regimen can be made.

A list of chemotherapy drugs and their common side effects is found at the bottom of this article.

PMP Pals has been working with patients taking chemotherapy for many years, and several patients have shared their tips for coping with side effects.

Nausea or decrease in appetite are among the most common side effects of chemotherapy, but not everyone experiences them.  Don’t automatically assume that you will be badly bothered by nausea.  You may not, or it may be mild.  There are several drugs that will calm nausea.  If what your doctor prescribes doesn’t provide relief, be sure to contact him/her so that a substitution can be made.   Always keep your nausea medication with you and be sure to take it when the nausea begins.  Drink plenty of fluids; hydration is important.  Eating small meals or snacks of bland foods frequently throughout the day can be helpful as well.  Being outside in the fresh air can be beneficial, because some patients have a heightened sense of smell during chemotherapy and certain odors can bring on nausea.  Some patients find benefit from a heating pad on the stomach.  Antacids may be helpful, but check with your oncologist and do not exceed the maximum dosage.  Medications prescribed to treat nausea associated with chemotherapy include Dexamethasone (Decadron), Avitan (Lorazepam), Zofran (Ondansetron), Compazine (Prochlorperazine), and Emend.   Gravol (Dimenhydrinate),  a motion sickness tablet available over the counter, may also be useful.  Always check over the counter medications with your oncologist.

Fatigue often occurs the first few days following chemotherapy sessions, but usually improves by the end of a week.  Take naps or get plenty of rest these first few days.  If you must continue to work your regular schedule, try to schedule your chemotherapy sessions late in the week, so you can rest over the weekend.  Rest is your recuperative mechanism.

Neuropathy is tingling, numbness or pain in your fingers or toes.  if you experience  this, report it and its intensity to your oncologist.  If it’s severe, the chemotherapy dose or schedule may be adjusted.  Sometimes neuropathy is temporary and abates several months after finishing chemotherapy treatments.  Some have found that IV or oral supplementation with minerals (calcium and magnesium) can minimize neuropathy.  Alpha-Lipoic acid is another supplement that benefits some patients.  Acupuncture can be helpful.  Ask your oncologist about these treatments if you encounter neuropathy.

Hand and Foot Syndrome is heightened sensitivity, drying and cracking of the skin on hands and feet.  If this is mild, Working Hands Cream may be sufficient.  If not, the doctor may prescribe a cream containing urea.  Many patients find that applying cream and then wearing socks on both the hands and feet to bed at night is helpful with these symptoms.

Some of the chemotherapy regimens result in sensitivity to cold, even to touching cold objects.  Consider wearing a hat and gloves, especially if you go outside in cold weather.

If you receive an injection for low white blood counts due to chemotherapy, there is an oral over-the-counter antihistamine called Claritin that, if taken before the injection, can often prevent the flu-like side effects.

Nosebleeds can occur in patients taking Avastin.  Sit up straight and apply pressure below the nose if this occurs.  If this is a common or severe problem, the oncologist should be made aware of it.

Some patients produce a lot of mucous in the nose and mouth on some regimens.  If you experience this, be sure to always have tissues available; in your car, home, pocket or purse.

Hair loss, while temporary, can be very distressing.  There is a product called Cold Cap that can reduce or eliminate hair loss.  The cap is only available to patients who use a chemotherapy clinic that has special freezers for storing them.  Ordinary freezer temperatures are not cold enough to be effective.  Information and a list of facilities that have the equipment can be found at http://www.rapunzelproject.org/coldcaps.aspx

In order to avoid those “scorcher days” in the hottest summer months, schedule your chemo for early in the mornings so that you can return home before the hottest parts of the day.  It is especially important to drink plenty of fluids when the weather is hot.  Hydration is essential.  Wearing loose clothing and nibbling on popsicles, snow cones and ice chips can also help to “keep your cool”.  Avoid going outdoors in the middle of the day, whenever possible.  If there is hair loss, a loose headscarf can be cooler for women than wearing a wig when at home.

Many patients have stated that attitude is everything.  Distraction for the first few days following chemotherapy treatments is very helpful.  Watch movies, make plans for a vacation when you feel better,  email friends and family, etc.  Remind yourself in those dark hours that this is temporary and the chemotherapy is poisoning the cancer.  Rest when you are fatigued, eat when you are hungry, and engage in enjoyable activities when you feel able.

Table of Chemotherapies for PMP

Brand Name Generic Name For Administration Mechanism Common Side Effects
Mutamycin Mitomycin-C PMP HIPEC DNA crosslinker effectively kills bacteria nausea, vomiting, loss of appetite or weight, sores in mouth and throat, headache, fainting, blurred vision, hair loss, loss of strength and energy, rash
Adrucil 5-FU colon cancer intravenous interrupts DNA replication nausea, vomiting, diarrhea, mucositis, headache, myelosuppression, alopecia, photosensitivity, hand-foot syndrome, maculopapular eruption, itech, cardiotoxicity, persisitent hiccups, mood disorders
Xeloda Capecitabine colon cancer pill metabolizes to 5-FU and interrupts DNA replication nausea, vomiting, diarrhea, mucositis, headache, myelosuppression, alopecia, photosensitivity, hand-foot syndrome, maculopapular eruption, itech, cardiotoxicity, persisitent hiccups, mood disorders
Leucovorin Folinic acid enhancing 5-FU toxicity pill, intravenous provides a source of reduced folinates which stabilizes 5-FU
Eloxatin Oxaliplatin colon cancer intravenous inhibits DNA synthesis causing cell death peripheral neuropathy, fatigue, nausea, vomiting, diarrhea, neutropenia, ototoxicity, extravastion, Hypokalemia, persistent hiccups
Camptosar Irinotecan colon cancer intravenous inhibits DNA replication and transcription diarrhea, immunosuppression
Avastin Bevacizumab colon cancer intravenous inhibits growth of new blood vessels hypertension, heightenend risk of bleeding, bowel perforation
Erbitux Cetuximab colon cancer intravenous epidermal growth factor receptor inhibitor rash, fevers, chills, rigors, urticaria, pruritis, hypotension, bronchospasm, dyspnea, wheezing, angioedema, dizziness, ahaphylaxis, cardiac arrest
Vectibix Panitumumab colon cancer intravenous epidermal growth factor receptor inhibitor skin rash, fatigue, nausea, diarrhea, decreased magnesium levels
Removab Catumaxomab ascites intraperitoneal binds to EpCAM-positive tumors to enlist immune system response fever, nausea, vomiting
Lonsurf trifluridine + tipiracil colon cancer pill incorporates into DNA during synthesis and inhibits tumor growth anemia, neutropenia, fatigue, nausea, throbocytopenia, decreased appetite, diarrhea, vomiting, abdominal pain, pyrexia

Contributors to this article include Elaine, Paul, Karen, Joanne, Mark, Robert, Andy, Warren, Sandra, Misty, and Gabriella Graham.

Changing Pseudomyxoma Peritonei Tumors and How We Can Treat Them

Posted by on 9:46 am in After surgery, Causes, Genetics, Life after PMP, Nausea, Uncategorized | Comments Off on Changing Pseudomyxoma Peritonei Tumors and How We Can Treat Them

appendix cancer prognosisI’ve recently been asked what patients may have done to cause their appendix cancer to recur more aggressively. In this blog I’ll share some thoughts on why pseudomyxoma peritonei (PMP) may change over time and the strategies you might employ to combat these changes. It’s an important discussion because it’s natural for PMP to change and it’s not necessarily something we can control. Obviously, we want to do the best we can to manage the things in our control, but life is always a balancing act.

Cancer is by definition normal cells that have mutated genetically, often due to a combination of factors, some of which we control and some o
f which we do not. Those factors which are uncontrollable include the genetics we inherit from our parents and the pollution in our environment. Factors we can control include our diet, exercise and amount of rest we get. But it’s often a mixed bag of what we control and what we can’t, even for the things we’re able to manage.

Cancer patients struggle daily with the emotional challenges of worrying about their well-being and (potentially) the physical challenges stemming from the aggressive treatments enlisted in the hopes of curing them of PMP. It’s easy to imagine how this would have a direct impact on a patient’s stress level and amount of sleep they get. Perhaps more difficult to imagine is, although cancer patients want to eat a healthy diet of fruits and vegetables, it may be more difficult than usual due to nausea from chemotherapy or intestinal blockages following surgical procedures. In the balance of all things, what’s most important is that patients get enough calories to maintain their weight, take all medications as prescribed by their doctors and maximize the amount of fruits and vegetables they can tolerate.

Once PMP is established its tendency is to change and become resistant to treatments. Cancerous cells have inherently lost the natural ability that our healthy cells have: to monitor their health and to kill themselves if they become unhealthy (the normal ability of a cell to kill itself when unhealthy is called apoptosis). As cancer cells multiply over time, they also continue to mutate and change unchecked due to their faulty reparative systems. These continual changes can cause the cancer to stop responding to treatments it responded to before (cancer is called refractory when it stops responding to treatment that worked before). This is a normal part of how cancer works, unfortunately.

The standard of care for the treatment of appendix cancer and PMP is cytoreductive surgery with hyperthermic intraperitoneal chemotherapy (CRS HIPEC). The hope for CRS HIPEC is to remove all PMP in the body, all at once in one shot. If you have a higher grade tumor, chemotherapy may be added in case there’s any microscopic, persistent or residual disease not removed by CRS HIPEC (chemotherapy administered immediately following another treatment in the hopes of eradicating any remaining disease is called consolidation therapy).

Please understand that just because PMP becomes resistant to one treatment, doesn’t mean it can’t ultimately be controlled through another. We are aware of patients that have repeated CRS HIPEC and used a different chemotherapeutic agent during HIPEC, which has ultimately gotten rid of the disease (typically Mitomycin C is used, but we’re heard of other agents, like Melphalan, being successfully used in repeat surgeries). This is something you can discuss with your physicians as a possibility for you or the patient you’re caring for.

Most importantly, and sometimes most difficult to understand (and this is where things get philosophical), whether you’re fighting cancer or not, our encouragement is for you to make the most of every day you have. We know PMP patients and caregivers across the continuum of the journey of life, and no matter what your circumstances, you can do great things. It’s not always easy but you can manage life even with PMP. At the PMP Pals Network we’re more than happy to introduce you to other patients and caregivers that have navigated these waters. If you’re interested in learning more, send us an email at info@pmppals.net or submit a request for a mentor at pmppals.net, and our team will get back to you right away. We have HOPE for YOU.

Chris Piekarski – President, PMP Pals. PMP Survivor since 2004.

Could the Social Security Compassionate Allowance Initiative help support you financially?

Posted by on 6:01 am in Facebook, Financial Support, Life after PMP, Testimonials, Twitter, Uncategorized | Comments Off on Could the Social Security Compassionate Allowance Initiative help support you financially?

Compassionate Allowance Initiative from Social Security

By Shealy McCoy

What is the Compassionate Allowance Initiative?

The Compassionate Allowance Initiative is a way to expedite the processing of Social Security Disability Insurance or Supplemental Social Security Income disability claims for people whose medical conditions are so severe that their conditions obviously meet Social Security’s definition of disability. It is not a separate program from Social Security Disability Insurance and Supplemental Social Security Income. Source http://www.ssa.gov/compassionateallowances/

 

Am I eligible for Social Security Disability benefits using the Compassionate Allowance Initiative?

You may be able to file for Social Security Disability Insurance benefits through the Compassionate Allowance Initiative. The following may help you in your decision to pursue:

  • You must be a US Citizen
  • See if your specific diagnosis is listed in the SSA Compassionate Allowance Conditions List. http://www.ssa.gov/compassionateallowances/conditions.htm
  • Review your employment history to verify that you have satisfied the required 40 quarters/10 years of needed contributions to the Social Security system.
  • If you have qualified thus far it is time to talk with your health provider.

 

Could I be eligible for Social Security Disability benefits without using the Compassionate Allowance Initiative?

Yes, you may be eligible but that is another article. You need to understand that Social Security Disability Insurance and SSI or Supplemental Security Income are benefits payable for total disability.

“Disability” under Social Security is based on your inability to work. We consider you disabled under Social Security rules if:

  • You cannot do work that you did before;
  • We decide that you cannot adjust to other work because of your medical condition(s); and
  • Your disability has lasted or is expected to last for at least one year or to result in death.

This is a strict definition of disability. Social Security program rules assume that working families have access to other resources to provide support during periods of short-term disabilities, including workers’ compensation, insurance, savings and investments.

Refer to the site below for information on disability.

http://www.socialsecurity.gov/planners/disability/dqualify4.htm/

My focus in this article is the disability application process as it pertains to the use of the Compassionate Allowance Initiative.

Check back periodically if your diagnosis is not on the current Compassionate Allowance Conditions List. Conditions are added.

 

Where do I begin with the disability application process using the Compassionate Allowance Initiative?

The application process begins with you. If you met the initial requirements and your condition is listed you may decide to pursue filing for benefits. If you file it is important that you work with your doctor and their staff. The doctor is not an expert in understanding the disability application process but the diagnosis and disease stage are imperative to meeting the definition of condition in the Compassionate Allowance List.

You will need to understand that having a condition on the list only provides for an expedited review by Social Security and does not guarantee approval. The application requires details of your medical condition, dates of doctor visits, surgeries, and if you are currently employed.

The application is online at http://www.ssa.gov/myaccount/

 

How long will it take for the application review and awarding of benefits?

 An exact time line is difficult to be given.  In my own experience it was about forty-five (45) days from application and receiving the notice of a benefit award. There is then a five (5) month waiting period until you receive the first benefit. You may track this through this site:

http://www.ssa.gov/myaccount/

 

What is the current listing that may be important to person with Pseudomyxoma Peritonei  ?

The Compassionate Allowance Conditions list has over two hundred medical conditions. The list contains a definition for Peritoneal Mucinous Carcinomatosis. This is an advanced stage of Mucinous growth in the peritoneal cavity.

See the definition at https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022975/

 

My Story

 I went to an emergency room with my stomach the size of a volleyball and in extreme pain in August 2011. An exploratory surgery was done as the General Surgeon was not sure what the scan was revealing.

I did ask for a second opinion but the oncologist was not certain until after a sample of the mucus in my cavity indicated a low grade cancer after my exploratory surgery. I was referred to Wake Forest where I was diagnosed with Stage IV, Peritoneal Carcinomatosis.

I had my first life saving HIPEC surgery on October 2011 and a second HIPEC surgery on October 2012. I learned of the Compassionate Allowance program through a posting on the PMP Pals site on November 2012.

I applied for the social security disability benefits on September 1, 2013 after being able to retire from my state position. I received my first benefit on February 1, 2014. I was fortunate to have a very good Social Security employee, who provided great advice.

Siocial Security Compassionate Allowance

Palliative Care – The New Model

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Recently several Pals attended the PMP/Appendix Cancer symposium at the University of California at San Diego, where Eric Roeland, M. D. spoke on palliative care during cancer treatment. He stressed that under the new model, palliative care starts early.  Under the old obsolete model, palliative care normally would start after it appeared that other treatment was not moving the patient towards a cure.  Your medical team now can set up a plan of palliative care very early to help both patients and caregivers deal with the physical and emotional side effects of cancer treatments.  The goal is to improve your quality of life.  We encourage you to take advantage of drugs, nutrition, exercise, emotional support, insurance or financial counseling, and other palliative care services to enjoy the best possible quality of life.  Find out more about palliative care basics from the National Cancer Institute, http://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet.

Dr. Roeland gave an informative overview of the use of pain medication, common in palliative care.  For example, did you know that for orally-administered pain medications, peak relief is reached in one hour?  For IV-administered medication, it is ten minutes; for intramuscular, it is about 30 minutes.   Please talk to your doctor about whether your pain is short term or long term, because that will affect what delivery system is used for relief.

He also addressed a common side effect of pain medication – constipation.  For example, he contrasted the effect of stimulant laxatives to stool softeners.  Motility is the issue when opioids are used – they slow bowel motility. A stimulant addresses that, a stool softener does not.  He recommended a senna-based laxative.  Patient response differs – some patients can take as little as one pill a day, others need up to 8.  He recommended a senna tea for those particularly sensitive.  If you are experiencing anemia, ask your doctor about an IV infusion to avoid constipation that oral iron supplements can cause.   And, importantly, if you are experiencing sudden nausea or vomiting, it can signal a bowel obstruction, so seek emergency medical attention.

On the issue of loss of appetite, Dr. Roeland sees conflict at times between the patient who does not feel like eating and a caregiver who commonly expresses concern by providing food.  Caregivers, if you find yourself in this situation, think of other ways to show your love so that food does not become a battleground.

Finally, remember that palliative care is not the same as hospice care, which normally is provided during the last few months of life.  Palliative care can be provided whether the patient is undergoing a curative treatment or not.  It should start early, and it seeks to ease side effects – both the physical and the emotional stress of cancer treatment. Early palliative care can result in a better quality of life for both patients and caregivers.  Talk to your doctor about a plan for you.

Go to You Tube to see Dr. Roeland’s recent speech. For more information on pseudomyxoma peritonei and for support for those fighting the disease, go to pmppals.net.

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