Today's question comes from SG in Europe:

SG asks:

"My mother has a recurrent ovarian cancer in the peritoneum.We would like to know whether HIPEC is a treatment option for her.

Has anyone had HIPEC  for reccurent ovarian cancer in Europe? Where exactly can I find a HIPEC treatment specialist in Europe?"

PMP Pals responds:

There are several HIPEC Treatment Centers of Excellence throughout Europe.

You did not mention your mother's country of residence, therefore please click here to refer to our international listing of HIPEC treatment specialists.

The HIPEC treatment surgeons are listed in alphabetical order according to their surnames."




Articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed professional legal or medical care. Each patient is unique and should seek the counsel of a licensed professional for their own specific case. Copyright © 2012 by PMP Pals’ Network/All rights reserved. Visit us on the web at www.pmppals.org
 

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Fred Suggests a Frank Discussion About Post Op Recovery!

By “Pal” member, Fred, from the USA

“A frequent concern that arises among patients who are planning to, or have had CRS and HIPEC, is the length of time required to recover.  A corollary to recovery time is what “recovery” actually means.   Before addressing these issues, I should emphasize that each patient’s experience will differ depending on a host of factors (e.g., age, general health, extent of tumors, type of cancer, invasiveness of surgery, etc.).  There is no simple rule of thumb to determine an expected recovery time.

What is recovery?  How do patients and surgeons define “recovery?”

 This question is one that never occurred to me in my initial discussions with my surgeon; as a result there was a misunderstanding.  He did not mince words regarding the seriousness of my condition and the necessary surgery.  However, he indicated that I should be back to “normal” in a few months.  The problem was his idea of “normal” and mine were different.  I viewed “normal” as my state of health prior to developing the disease.  His notion was apparently being able to return to work and everyday activities free of the disease. 

In brief, my post operation weight dropped from about 150 to 109 before recovering to 118, which is my new “normal” (permanent weight loss is a common result of the surgery) and the necessary removal of various organs and sections of organs has had a major impact on my digestive system, which in turn has affected my quality of life in certain ways.  As I’ve often joked, I’ve developed a close personal relationship with my bathroom and have become much more aware of the locations of public facilities.  Thus, in one sense I’ve never “recovered” from the surgery; I have not returned to my prior state of health.

However, I did return to work, returned to my nature photography, and took up competitive table tennis after a 30 year hiatus. I am physically able to do most things I did pre surgery, including working out at a fitness center several times a week, but am acutely aware of the limits due to the digestive issues.

Time frame for recovery

My particular surgery was about 10 hours. I spent almost a month in the hospital before being released, then another few days a week later due to dehydration. 

At home, I began walking around the neighborhood gradually lengthening the time and distance as I felt stronger   I was able to return to my desk job on a part time basis 3 months after surgery and on a full time basis a couple of months later. 

I began doing my nature photography carrying very limited equipment about 4 months after surgery and a full backpack about a year after surgery.

Recovery, the “new normal”, and Senior Olympics!

I retired 14 months after the surgery and began playing table tennis at a local club soon after, winning two bronze medals and a silver medal in the local senior Olympics and a bronze medal for my talent level at the 2011 U.S. nationals this past December. 

Looking back, I’d say full recovery for me, which I’d define as reaching my new “normal,” took about 9-12 months.  As noted above, and as a former economist, I again emphasize that I represent just one data point.  Recovery time will vary considerably across individuals.”

Articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed professional legal or medical care. Each patient is unique and should seek the counsel of a licensed professional for their own specific case. Copyright © 2012 by Gabriella Graham/PMP Pals’ Network/All rights reserved. Visit us on the web at www.pmppals.org
 

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Should I Use Marijuana for Pain Relief Before Surgery?

Today’s question comes from SS who is preparing for CRS and HIPEC:

“I am scheduled for CRS and HIPEC in ten days. I am experiencing a lot of pain, but my physician has only prescribed Tylenol and no other pain killers. My son has suggested that I use marijuana for pain relief. Are there any accounts of PMP patients using marijuana to relieve pain?”

GG responds:

“When you experience pain, you must bring your symptoms to the attention of your attending physician. S/he may be able to refer you to a pain management specialist.

Since you are scheduled for surgery in ten days, you must be especially careful to discuss any medications, even vitamins and “natural” herbs, whether prescribed or OTC, with your anesthesiologist and your surgical oncologist, as these medications may have an effect on your preparation and recovery from surgery.


Articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed professional legal or medical care. Each patient is unique and should seek the counsel of a licensed professional for their own specific case. Copyright © 2012 by Gabriella Graham/PMP Pals’ Network/All rights reserved. Visit us on the web at www.pmppals.org

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When will I feel stronger after surgery and HIPEC?

Today’s question comes from RS from the US:

“I had CRS and HIPEC three weeks ago and have been home from the hospital for more than a week. Everything went well during my surgery and my surgeon is pleased and optimistic about my prognosis. I still feel tired from my surgery and am quite fatigued. When will I feel stronger?”

PMP Pals responds:

“Congratulations on returning home from the hospital! Generally, after we return home (away from the hustle and bustle of the hospital!) our recuperation gradually improves within the peaceful surroundings of our own home…notice that I said “gradually” as recuperation from major surgery, requires patience, patience, and more patience!

Most “Pals” tend to be active, productive people! We are not used to lying around and waiting to feel stronger!

If you have not already advised your surgeon specialist, and your local healthcare provider of your fatigue, please do so today. Aside from the obvious reason of your body needing more time to gradually heal, you may also be experiencing post-operative malnutrition (fairly common with GI and colorectal cancer patients like us) and/or anemia/iron depletion.

Your local physician, perhaps in conjunction with an endocrinologist, can test you for any conditions that may have arisen following surgery. The battery of tests will include checking your blood sugar levels, etc. These tests can all be performed with minimal stress to you.

Your physician may test you for any changes in your blood pressure, as irregularities may also contribute to your feelings of fatigue. Are you staying hydrated? Hydration can also be a factor in feeling excessively tired.

You live in the northern hemisphere and returned from the hospital during the winter. During this time of year you may experience shorter days, with less sunlight and colder weather. It is the natural human condition (not a disorder) for many people to feel less energetic during the colder season with shorter days. This factor may also contribute to your symptom of fatigue.

Recuperation rates vary among patients for a wide variety of reasons, including their age, overall health pre surgery and the caregiving/support they receive at home.

Many post op patients find it helpful to take “cat naps” during the day and to eat six or more small meals throughout the day, to help re build their stamina. Expect gradual and subtle improvements through the next five weeks.

Typically, it takes at least eight weeks, post CRS and HIPEC, for a patient to regain approximately 80% of their pre surgery energy. Your improvement will continue throughout year!

We are optimistic about your future and will congratulate you on looking forward to the spring season with improved health!”


Articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed professional legal or medical care. Each patient is unique and should seek the counsel of a licensed professional for their own specific case. Copyright © 2012 by Gabriella Graham/PMP Pals’ Network/All rights reserved. Visit us on the web at www.pmppals.org

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_ Are Gas Pains Normal After GI Surgery?

“Gas” pains are experienced by many GI cancer patients following surgery. These pains will likely be resolved in a matter of a few days, while the digestive system begins to “wake up” recuperate and heal from surgery.

Medications commonly administered after surgery tend to "slow the gut" thus contributing to more "gas" for many patients; therefore some of patients request to reduce the amount of pain medications (narcotics) administered.

Additionally, some of the painful symptoms associated with bloating and “gas” will begin to subside when the patient is able to take longer walks in the hospital corridors. Our digestive systems are not designed for lying in bed all day and respond better when we are able to exercise walk around a bit!

For detailed information concerning your specific medical concerns, consult with your licensed healthcare provider.

 

 

Information posted on www.pmppals.org is not intended to substitute for licensed, professional legal or medical advice. Readers are encouraged to seek the counsel of licensed professionals regarding their own personal specific legal and medical needs. Copyright© 2012 by Gabriella Graham/PMP Pals’ Network. All rights reserved. Visit us on the web at www.pmppals.org We have HOPE for YOU! J

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_ Why Am I Still Fatigued After CRS and HIPEC?

AR, age 50+ asks today’s question about post op fatigue. She had CRS and HIPEC four months ago, has returned to work and feels very tired at the end of her day.

“I find it to be challenging, four months post-op, to work all day, then complete my chores at home. Is it normal to feel this tired four months after surgery?”

GG responds:

“As in any case, consult with your physician to determine the cause of your disease. Among other non invasive tests, laboratory “blood work” tests can determine whether you are anemic, have a thyroid imbalance, or other possible contributors to fatigue.

You experienced a very major surgery sixteen weeks ago. The recuperation process for such a complex surgery is gradual.

Most patients who experience CRS with HIPEC are between the ages of 45 and 65 years old. I remind our fellow ‘Pals’ (with a dose of humor) that ‘we aren't 19 years old anymore!’ In other words, we don't ‘bounce back’ as quickly from major surgery as we might have when we were 20 or 30 years younger.

Additionally, recuperation may tend to "feel" a bit slower now during the winter months when many people feel sluggish in general.

Be patient with your recuperation.

By the time your one year post op anniversary comes around, you will feel much better and you will be in awe of yourself when you look back and reflect on your surgery and recuperation!

You are a cancer survivor!

The PMP Pals are optimistic for your healthy and happy future!

 

 

 

 

 

For more information on this topic see “When Will I Feel Stronger After Surgery?” on www.pmppals.org

 

 

 

Articles posted in “PMP Pals” and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended to substitute for licensed professional legal or medical care. Each patient is unique and should seek the counsel of a licensed professional for their own specific case. Copyright © 2012 by Gabriella Graham/PMP Pals’ Network/All rights reserved. Visit us on the web at www.pmppals.org

 

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_ FAQ: “Does CRS and HIPEC Cause Dental Sensitivity?

Brian from the USA submits today’s FAQ. He was treated with CRS and HIPEC at a cancer treatment center last month, and has experienced dental sensitivity during his recuperation.

Q: “My teeth have been very sensitive to hot and cold following my surgery, a few weeks ago. The pain was more pronounced during the first two weeks following surgery, while I was hospitalized, yet continues to a lesser degree now that I am recuperating at home.

Have other ‘Pals’ experienced dental sensitivity after surgery? Is this a side effect of HIPEC? Neither my surgical oncologist, nor his assistant, have ever had a post op patient complain of this symptom before.”

Pal Patient, and Dentist, Dr Robert Rauch, USA, provides today’s response to this question:

The PMP Pals’ Network (established1998) has never received a complaint about post op dental sensitivity before. We suspect there is another cause for the sensitivity you are experiencing, and that it is not related to CRS HIPEC.

We suggest you schedule an appointment to consult with your personal dentist.

In the meantime, consider using Sensodyne, or a similar brand of toothpaste, specifically developed to protect against, and to provide relief from, dental sensitivity.

It is possible that the pain and sensitivity you are experienced is caused by clenching your jaw and/or grinding your teeth; common reactions to stress and tension. Patients may feel stressed during the weeks immediately following surgery. Some patients don’t recognize or realize when they are clenching their jaw during their waking hours, or, while sleeping. Your dentist can create a bite guard, customized to comfortably fit you, to alleviate this problem, if it is determined to be the source of your discomfort.

Your dentist can also examine your teeth to determine whether there is any other underlying source (eg an infection) as a possible cause of this pain.”



Robert Rauch, DDS is an Appendix Cancer patient, has personally experienced CRS and HIPEC, and serves as a Pal Mentor for the PMP Pals’ Network. He has been a dentist, in private practice for more than 30 years. Dr Rauch is the author of several books, including "SMILE: Be true to your teeth and they will never be false to you" and “Spiritual Signs and Lessons of a Survivor, Parts I and II.” Visit the “Recommended Reading” link on www.pmppals.org to order these inspirational books.

Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for professional, licensed legal and/or healthcare advice. Patients should seek the counsel of their licensed professional consultants regarding their specific needs. Copyright © 2012 by PMP Pals’ Network/All rights reserved

 

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_ Should I Take Probiotics After Appendix Cancer Surgery?

Today’s question comes from Brian in the USA:

“I am recovering from CRS and HIPEC and have had several organs removed from my digestive system. I have an ileostomy, which may be ‘reversed’ in the future. I am just beginning to eat solid foods again. Like any surgical patient, I have been receiving antibiotic therapy.

Should I take probiotics?”

PMP Pals responds:

“Patients like you have specific nutritional needs. Your question is best answered by your professional healthcare team, including your surgical oncologist, and specifically, your registered dietician.

Since you have an ileostomy, you may experience a “rapid transit” of contents from your stomach and small intestine, out through your stoma. This phenomenon is also referred to as “dumping syndrome.”

If you experience this, the benefits, if any, of probiotics, or any other supplement, may be negligible as the supplement may not remain in your digestive system long enough to be absorbed and to be effective.

Ask your registered licensed dietician to review your specific needs with you. Provide your dietician with a copy of your operative report so s/he can read exactly which portions of your digestive system have been removed and “re routed” (for lack of a better description!) to determine which foods and/or supplement may be beneficial to you.

Please refer to the Nutrition pageand the Blog Library on www.pmppals.org for numerous articles pertaining to the nutritional needs of Appendix Cancer, PMP and PSM patients."

 






Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their families and are not intended to substitute for licensed, professional, legal or medical advice. Patients should seek the counsel of their licensed healthcare providers.

 Copyright © 2012 by Gabriella Graham/PMP Pals’ Network/All rights reserved.

Visit us on the web at www.pmppals.org We have HOPE for YOU!

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_
AR from the USA asks:

"I had CRS and HIPEC three months ago. It's time for my first post operative check up.

Should I return to the surgical oncologist who performed my surgery, or should my check up be evaluated by a local oncologist?"

PMP Pals responds:

"While it may be preferable to return to your surgical oncologist for your first, and all subsequent, post op check ups, sometimes, due to long distances, it is not practical to travel back to the cancer treatment center hospital for your quarterly check ups.

In these cases, be sure that your local oncologist (or family physician or gastroenterologist)  communicates directly with your surgical oncologist to order the specific CT (or other) scans and laboratory tests needed to monitor your post op care.

Your post op diagnostic and monitoring (scans and "bloodwork) can be performed locally, as ordered by your local physician, and can be transmitted electronically, or by postal mail to your surgical oncologist where s/he can review them, and can report back to you and your local physician as to whether additional treatment is necessary."



Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their families and are not intended to substitute for licensed, professional, legal or medical advice. Patients should seek the counsel of their licensed healthcare providers. Copyright © 2012 by Gabriella Graham/PMP Pals’ Network/All rights reserved.
Visit us on the web at www.pmppals.org We have HOPE for YOU!

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_ Does food interfere with the effectiveness of chemotherapy?

 

Appendix cancer patient, KR, from the USA, will begin systemic chemotherapy treatment, using Folfiri, within a few days. She submitted the following question to the PMP Pals’ Network:

 

“I read on the internet that some foods may interfere with the effectiveness of chemotherapy. Which foods should I avoid?”

 

PMP Pals replies:

 

“We are not aware of any foods that interfere with the effectiveness of chemotherapy.

 

1. There are a wide variety of chemotherapies. When seeking information, be sure that the information you obtain is specific to the chemotherapy prescribed to you, in this case Folfiri.

 

2. Always seek advice of this nature from your oncologist and your pharmacist.

 

3. A helpful source of information, specific to your question is the advice nurse available via the manufacturer/producer of nearly any chemo prescribed for you. The major pharmaceutical companies (e.g. Roche, Teva, etc.) provide telephone advice nurses to answer questions from patients.

 

The PMP Pals' Network does not endorse the use of online "chat rooms", "message boards", Facebook, etc. for obtaining detailed medical information. Specific medical information should be directed to one's licensed, professional healthcare team.

 

 

 

 

 

 

Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their families and are not intended to substitute for licensed, professional, legal or medical advice. Patients should seek the counsel of their licensed healthcare providers. Copyright © 2011 by Gabriella Graham/PMP Pals’ Network/All rights reserved.
Visit us on the web at www.pmppals.org We have HOPE for YOU!

 

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