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Maureen, Volunteer Mentor
@alpaca

Posts: 208
Joined: Nov 17, 2016

Overmedication with cancer and other conditions

Posted by @alpaca, Apr 17, 2018

This could possibly be on another Mayo thread but this is my home base so I’ll start (I hope) a discussion here. A lot of us with cancer are getting older and have comorbidities (new word I have acquired on this journey), so a danger is that we need a lot of medications to control not only pain but blood pressure, thyroid etc. We can be caught up in a tangle of medications all with their side-effects and possibly interactions. Do you have any tips about how to manage this?

REPLY

@cindylb

Indiana Scott – you bring up another interesting point regarding medications. When you have multiple doctors involved in the care of one patient meds can get confusing. Each doctor is 'tasked' with certain duties for a patient. In the case of cancer, it's curing cancer and sometimes that seems to be at the exclusion of other concerns (sometimes). It's their job and 'ego' to cure or get cancer in remission. At times that can be at the cost of side effects from drugs or other conditions that send you off to another type of doctor. Of course, not all doctors think so singularly………some do consider the side effects and long term effects of treatments and medications. But I do believe any patient either needs a caretaker or support person in their corner or if they're on their own…..a group like this that gives them multiple perspectives. I liked your "Kramer v. Kramer" analogy. I've hit that point a couple of times myself!

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Good points, @cindylb In one regard we were 'lucky' (I know it is an extremely odd word for me to use here) in that we all knew it was the brain cancer that would ultimate win the war my wife was waging. As such her neuro-oncologist took a strongly focused approach to her care based on this knowledge. That said, I will quickly add I know cancer is an incredibly unique disease, which effects each patient differently, and to which each patient responds in their own manner. One size definitely does not fit all when it comes to this beast.

Strength, courage, and peace!

Hi @lisakuehl I am not any kind of medical professional, but both my wife's weight and ability to eat, drink, etc. significantly effected her dosages. While she was unable to get on a scale and greatly disliked the chair-style weighing device, the docs had me continually take certain measurements of her to estimate body weight changes and to log her eating/drinking habits. Many dosage changes were made based on changes in her physical condition as was the format of several medications (changing from pill to liquid, from a suppository to an ointment, and others). Sorry I don't know more on this.

Strength, courage, and peace!

@gaybinator

@jaler I keep my husband's drug list on the computer (sample attached). Anytime he adds/subtracts a med I can easily change the list. I print a few copies to keep with us and present it to the receptionist at every doctor's appt. While the Mayo Pharmacy would have safeguards for drug interactions for the prescriptions they fill, I wouldn't expect them to keep up with prescriptions filled elsewhere.

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Excellent

@gaybinator

@jaler I keep my husband's drug list on the computer (sample attached). Anytime he adds/subtracts a med I can easily change the list. I print a few copies to keep with us and present it to the receptionist at every doctor's appt. While the Mayo Pharmacy would have safeguards for drug interactions for the prescriptions they fill, I wouldn't expect them to keep up with prescriptions filled elsewhere.

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@gaybinator I do the same so that I don't have to drag bottles around to Dr.'s visits or try to remember and write it all out on their tiny spaced form. I do the same thing with all the procedures and surgeries I have had in the past dozen years as I could never remember dates and I would likely leave out some surgeries w/out my list. I have a similar drug list that I use to prepare my weekly drugs by the day/night every Saturday morning when not much else is happening. I would b=never get it right each day otherwise. If I happen to be medicated more than normal, my wife helps me make sure I get it right, so she does not have to worry about what I take while she is at work. I wish all of that was not necessary, but better safe than sorry.

@IndianaScott

Very interesting and useful thread there! Thanks @alpaca aka Maureen 🙂 In my wife's case she was on a constantly changing stream of medications as they struggled with the constantly altering effects of her tumor. Initially it was a tough balancing act between her neuro-oncologist at Mayo, her GP at home, and our pharmacist. Early on our pharmacist was a huge help until our local pharmacy was sold to a chain and it was never the same pharmacist twice. I cringe when I think back to how much time I wasted re-educating pharmacist after pharmacist on who my wife was, what her condition was, and why she was on the cocktail she was on at that specific time. Grr!

Then there was the issue of doctor vs doctor, which put Kramer vs. Kramer to shame! Finally after a grueling 'duel', where I felt as if I were some bizarre type of Second, the neuro-oncologist finally convenience our GP to get out of the mediations loop (other than to be informed of any changes in meds or dosages). One professional ego took a hit and the relationship never recovered, but it was for the good of my wife so I was happy to give up the relationship I had with the same GP.

My wife was on a medicinal cocktail of 32 doses a day. Keeping them straight required a spreadsheet to keep track of the time of day and doses. Luckily, once my wife went into home hospice, her nurse transferred all her meds to another smaller pharmacy with a more stable staff and who delivered. They worked together hand-in-glove. At this point her meds were often changing daily so it was crucial for there to be solid, knowledgeable communications between all the medical pros! This was also critical when we had to go from pill-tablet-capsule form to all liquids for her meds since the liquid form often caused them to act differently, on a different timeline, absorption rate, etc. Unfortunately for future patients in our area, this pharmacy was also swallowed by a national chain and no longer offers the same level of service.

With all the progress in technology I would think information sharing would be simpler regarding patients, their medications, and the providers involved. Hopefully this will improve quickly, but give the conflicting forces of the profit motive, I have my doubts.

Strength, courage, and peace to all.

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@IndianaScott What an incredible story about meds, pharmacies and egos! You are quite the veteran of medication challenges.

Teresa

I give the list a name associated with the date, i.e. 04182018, so that the revisions are in order. This allows you to go back through them and see when a drug was stopped/started.

The list is very helpful in filling the little pill organizer every week, and a copy of the list stays on the counter with the pill organizer for reference. Some of the pills are very similar in size and shape, so it is easy to get confused about what is being taken at a given time.

@gaybinator

I give the list a name associated with the date, i.e. 04182018, so that the revisions are in order. This allows you to go back through them and see when a drug was stopped/started.

The list is very helpful in filling the little pill organizer every week, and a copy of the list stays on the counter with the pill organizer for reference. Some of the pills are very similar in size and shape, so it is easy to get confused about what is being taken at a given time.

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A trick I use when I'm creating files using dates and saving them in a folder or on a specific drive is to name the file using YYMMMDD, like 18Apr18-xxxxxxxx.ext That way you can easily sort and find specific dates quickly if you have a lot of files to look through.

@jaler

Mayo requires that you update your list of prescriptions they have on file each time you go to your doctor there. I have several different doctors at Mayo in addition to my hematologist who prescribed various drugs for the side effects of chemo therapy. I would hope that a Mayo pharmacist would go over these drugs periodically to alleviate any problems. In addition to the cancer drugs, I also have medications for blood pressure, hypothyroidism, GERD, COPD, asthma, cholesterol, pain from torn rotator cuff, etc. I have no idea if there are adverse interactions from any of these medications. Does anyone know whether the Mayo Pharmacy Department reviews these lists of medications?

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Judy, I also take a list of meds, not quite as many as you, but more than I'd like. When I go to an oncology appointment, or see my primary physician, the nurse or aide will ask me if there are any changes to my meds. That is the only person who ever reviews my meds. Wouldn't you think they should know this?! Does make me a little nervous sometimes. I've discovered some interactions by doing my own research. When I mentioned it to them, they take full credit for discovering it. Hmmm. Unfortunately, I'm required to order my meds through an online pharmacy (Express Scripts), and I truly doubt they check for interactions. However, they do send volumes of paperwork with each prescription. I've learned the hard way to be my own advocate, even though I have very little medical knowledge.

Liked by lucyholly18

@jaler

Mayo requires that you update your list of prescriptions they have on file each time you go to your doctor there. I have several different doctors at Mayo in addition to my hematologist who prescribed various drugs for the side effects of chemo therapy. I would hope that a Mayo pharmacist would go over these drugs periodically to alleviate any problems. In addition to the cancer drugs, I also have medications for blood pressure, hypothyroidism, GERD, COPD, asthma, cholesterol, pain from torn rotator cuff, etc. I have no idea if there are adverse interactions from any of these medications. Does anyone know whether the Mayo Pharmacy Department reviews these lists of medications?

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I think if they want us to review our medications each time we have an appointment at Mayo, then a pharmacist should be reviewing them for drug interactions or why bother to review them.   I wonder if anyone reviews them.

Many of you mentioned the role of the pharmacist as part of your care team and had specific questions. Well, I showed this thread to a Mayo Clinic pharmacist and she was glad to have the opportunity to weigh in. Here what she offered:

"Having a list of current medications, conditions and significant medical history and keeping that list updated and with you especially at medical appointments is such a helpful habit. You never know when it could literally save your life. Many smart phones also offer a medical alert app or function where this information can be stored and even accessed by paramedics in case of emergency. There are pros and cons to storing a list electronically vs. on paper. Ultimately it is a personal preference. MyMedSchedule (http://www.mymedschedule.com/) is one example of an app that allows you to enter and modify medications.

Important tips
1. When making your medication list make sure you know why you’re taking each medication. For example, if you’re taking a stool softener to prevent constipation with opioids and are no longer taking opioids, you can probably stop the stool softener. Sometimes this can be apparent to the healthcare providers, but missed by patients who don’t understand what their medications are for.

2. It’s important to clarify with your provider when new medications are started if they will be replacing older medications or taken in addition. Some patients require multiple medications to manage the same condition and that’s okay. Sometimes medications are started with the intent to reduce or eliminate existing medications but for a variety of reasons this doesn’t happen.

3. Filling all of your medications at one pharmacy can help reduce risks. A pharmacist may notice duplications, omissions or interactions that care providers aren’t aware of. This can happen when there are multiple providers involved in your care or when medication changes are limited in acute care situations.

Pharmacists know when to look more closely at a medication regimen to ensure optimal therapy. Pharmacists can help weigh the importance of drug interactions against the benefit of the medication in collaboration with other patient care providers.

In many cases there is quite a bit of room for variation which is why many dosage forms are in set strengths like 20 mg, 40 mg. That being said we are entering the age of individualized medicine where precision medicine, especially for cancer, transplant and other specialties, is becoming more and more accessible. In the age of cellular medicine and CAR-T it doesn’t seem too far of a stretch that we will someday have much less trial and error and more personalized preventative medicine that optimally treat or cure diseases even before we experience symptoms.

Patients with very complicated medication regimens may qualify for medication therapy management which is a service offered by Pharmacists at Mayo Clinic. You can hear more about this service by listening to a podcast here https://newsnetwork.mayoclinic.org/discussion/medication-management/

@colleenyoung

Many of you mentioned the role of the pharmacist as part of your care team and had specific questions. Well, I showed this thread to a Mayo Clinic pharmacist and she was glad to have the opportunity to weigh in. Here what she offered:

"Having a list of current medications, conditions and significant medical history and keeping that list updated and with you especially at medical appointments is such a helpful habit. You never know when it could literally save your life. Many smart phones also offer a medical alert app or function where this information can be stored and even accessed by paramedics in case of emergency. There are pros and cons to storing a list electronically vs. on paper. Ultimately it is a personal preference. MyMedSchedule (http://www.mymedschedule.com/) is one example of an app that allows you to enter and modify medications.

Important tips
1. When making your medication list make sure you know why you’re taking each medication. For example, if you’re taking a stool softener to prevent constipation with opioids and are no longer taking opioids, you can probably stop the stool softener. Sometimes this can be apparent to the healthcare providers, but missed by patients who don’t understand what their medications are for.

2. It’s important to clarify with your provider when new medications are started if they will be replacing older medications or taken in addition. Some patients require multiple medications to manage the same condition and that’s okay. Sometimes medications are started with the intent to reduce or eliminate existing medications but for a variety of reasons this doesn’t happen.

3. Filling all of your medications at one pharmacy can help reduce risks. A pharmacist may notice duplications, omissions or interactions that care providers aren’t aware of. This can happen when there are multiple providers involved in your care or when medication changes are limited in acute care situations.

Pharmacists know when to look more closely at a medication regimen to ensure optimal therapy. Pharmacists can help weigh the importance of drug interactions against the benefit of the medication in collaboration with other patient care providers.

In many cases there is quite a bit of room for variation which is why many dosage forms are in set strengths like 20 mg, 40 mg. That being said we are entering the age of individualized medicine where precision medicine, especially for cancer, transplant and other specialties, is becoming more and more accessible. In the age of cellular medicine and CAR-T it doesn’t seem too far of a stretch that we will someday have much less trial and error and more personalized preventative medicine that optimally treat or cure diseases even before we experience symptoms.

Patients with very complicated medication regimens may qualify for medication therapy management which is a service offered by Pharmacists at Mayo Clinic. You can hear more about this service by listening to a podcast here https://newsnetwork.mayoclinic.org/discussion/medication-management/

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@lisakuehl The Mayo Clinic pharmacist also added:

"Dosing recommendations can vary based on the medication.
– Weight: Some medications are more significantly weight based like heparins whereas many others are currently one-size-fits-all or titrated to effect by the clinician.

– Genetics: As we learn more about how our genes play a role in our response to different medications, having pharmacogenetics testing can help to reduce trial and error with dosing and suggest a more appropriate starting dose or perhaps dictate that a different medication or therapy is warranted all together.

– Age and Organ Function: As we age our bodies eliminate drugs differently as end-organ function declines. Often drugs are needed in smaller doses as we age because kidney and other organ function decreases. We begin to eliminate many drugs much less efficiently than a younger person with healthier organs. This is more important in certain drugs where precision dosing is indicated.

– Other Factors: Remember that there are often other factors that determine the dose our bodies actually receive including what we have to eat or drink with the medication and the pH associated with drug absorption.

@jaler

Mayo requires that you update your list of prescriptions they have on file each time you go to your doctor there. I have several different doctors at Mayo in addition to my hematologist who prescribed various drugs for the side effects of chemo therapy. I would hope that a Mayo pharmacist would go over these drugs periodically to alleviate any problems. In addition to the cancer drugs, I also have medications for blood pressure, hypothyroidism, GERD, COPD, asthma, cholesterol, pain from torn rotator cuff, etc. I have no idea if there are adverse interactions from any of these medications. Does anyone know whether the Mayo Pharmacy Department reviews these lists of medications?

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Drugs.com has a tool you can list all your medications and it will check for interactions and tell you what side effects are possible

@colleenyoung Maybe you will want to cross post this to other groups.

My husband has fought Squamous Cell Carcinoma since summer 2015. He has had many surgeries, many rounds of radiation, Erbitux from September 2016 to June 2017 when a pet scan showed that while the Erbitux had worked on the cutaneous lesions, the cancer had metastasized to his liver, diaphragm and neck.

He was started on Keytruda in June 2017 and PET scans in October 2017 and February 2018 were clear. He continued having profound fatigue and it was always blamed on "chemo" and radiation. Sometimes he would fall asleep in mid sentence. The Keytruda took his transplanted kidney – that is why we waited so long to try it. Of course, hindsight is 20/20. We now do home hemo-dialysis four times a week. When we do the dialysis, we have to keep a record of his blood pressure and pulse every 30 minutes.

Last Friday we had an appointment with his Nephrologist, who also acts as his primary doctor. One of the nurses from the dialysis center was there. I had the records from our prior month's dialysis sessions, so I gave them to her. She leafed through them and said, "Why is his blood pressure falling into the 40's?" She brought it to the doctor's attention. Turns out that a legacy blood pressure medicine called Atenolol was the reason. My husband had been taking it for years. He stopped that day, and the change has been nothing short of miraculous. Today he got out in the yard and worked for the first time in a couple of years.

The reason I telling this is that you should question everything. The pharmacist is so right about knowing WHY you are taking what you are taking. That nurse gave my husband a chance to live again, instead of just existing. QUESTION EVERYTHING!!!

@jaler

Mayo requires that you update your list of prescriptions they have on file each time you go to your doctor there. I have several different doctors at Mayo in addition to my hematologist who prescribed various drugs for the side effects of chemo therapy. I would hope that a Mayo pharmacist would go over these drugs periodically to alleviate any problems. In addition to the cancer drugs, I also have medications for blood pressure, hypothyroidism, GERD, COPD, asthma, cholesterol, pain from torn rotator cuff, etc. I have no idea if there are adverse interactions from any of these medications. Does anyone know whether the Mayo Pharmacy Department reviews these lists of medications?

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Thanks I’ll check it.

@gaybinator

@colleenyoung Maybe you will want to cross post this to other groups.

My husband has fought Squamous Cell Carcinoma since summer 2015. He has had many surgeries, many rounds of radiation, Erbitux from September 2016 to June 2017 when a pet scan showed that while the Erbitux had worked on the cutaneous lesions, the cancer had metastasized to his liver, diaphragm and neck.

He was started on Keytruda in June 2017 and PET scans in October 2017 and February 2018 were clear. He continued having profound fatigue and it was always blamed on "chemo" and radiation. Sometimes he would fall asleep in mid sentence. The Keytruda took his transplanted kidney – that is why we waited so long to try it. Of course, hindsight is 20/20. We now do home hemo-dialysis four times a week. When we do the dialysis, we have to keep a record of his blood pressure and pulse every 30 minutes.

Last Friday we had an appointment with his Nephrologist, who also acts as his primary doctor. One of the nurses from the dialysis center was there. I had the records from our prior month's dialysis sessions, so I gave them to her. She leafed through them and said, "Why is his blood pressure falling into the 40's?" She brought it to the doctor's attention. Turns out that a legacy blood pressure medicine called Atenolol was the reason. My husband had been taking it for years. He stopped that day, and the change has been nothing short of miraculous. Today he got out in the yard and worked for the first time in a couple of years.

The reason I telling this is that you should question everything. The pharmacist is so right about knowing WHY you are taking what you are taking. That nurse gave my husband a chance to live again, instead of just existing. QUESTION EVERYTHING!!!

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@gaybinator, this discussion along with your message has been cross-posted to other groups as it is relevant to everyone.

Wow! Thank you for sharing that first-hand story underlining the importance of knowing why you are taking the medications prescribed. Thank goodness that you are keeping track and providing reports and that the dialysis nurse flagged the issue. It really does take a team.

Incredible that this "simple" change has resulted in such a huge turn-around for your husband. I agree: Question everything.

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