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Endo cancer and cardiovascular death

Tamlen's picture
Tamlen
Posts: 319
Joined: Jan 2018

There's a new longitudinal study out, "Cancer Patients Are at Higher Risk of Dying from Heart Disease and Stroke." I think it's worth a read by all of us.

A few takeaways that particularly caught my eye:

"For some cancers, like breast, prostate, endometrial, and thyroid cancer, around half will die from cardiovascular disease (CVD)."

"Cancer survivors with cancer of the breast, larynx, skin, Hodgkin lymphoma, thyroid, testis, prostate, endometrium, bladder, vulva, and penis, are about as likely to die of cardiovascular diseases as they are to die of their initial cancer."

"We also found that among survivors with any type of cancer diagnosed before the age of 55 years, the risk of cardiovascular death was more than ten-fold greater than in the general population."

With longitudinal data like this, along with lots of recent research into CVD and cancer survival, it seems to me that referral to a cardio-oncologist should be the norm for all of us post-treatment. I'd just requested a referral for a cardio workup from my cancer center's survival clinic last week -- glad I did.

Northwoodsgirl
Posts: 572
Joined: Oct 2009

Very interesting article. I just saw my primary care doctor and asked about going on a statin but he said based on my cardiovascular risk score I didn’t need a statin. So after reading this most current study I am wondering if or when and how their cardiovascular risk decisio tool will be adjusted to reflect the nuisances of a cancer survivor. I am going to send this article to my primary care doctor. Would be a great article to give to a cardiologist too. Thank you for posting! 

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

My GP put me on a low-dose statin after my cancer diagnosis. Right now my cholesterol is fine with the triglyceride level slightly high. Heart disease runs in my family with my brother having a fatal heart attack at 37 and my father at 57. My mother had her first heart attack in her 40s. Of course, all the were heavy smokers.  I've never smoked but know I'm high risk and had another EKG in August. 

Thanks for the info!

Love, 

Eldri 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Thanks for sharing this article. Interesting and sure makes me think about getting off of my butt and on the treadmill for sure! My cholesterol and triglycerides are not where they should be. My GP gave me a year to get them down or go on meds. Hopefully, I'm going in the right direction. But, after reading this, I may be more open to taking meds if I'm not....  My weight is within the healthy catagory but I know I can do more cardio than I do. Heart disease runs heavily in my family - both parents and 3 brothers.... UGH! 

Love and Hugs,

Cindi

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

Before I had Adriamycin (doxorubicin) as part of my "phase 2" chemo, the oncologist ordered an echocardiogram to make sure my heart was healthy since Adriamycin can seriously impact the heart. My heart was fine. But I haven't had a check on my heart function since, although I've thought about it occasionally to see if the chemo caused any damage, although I haven't noticed any ill effects.

I was already taking a statin and ACE inhibitor for several years before I had cancer because of my diabetes and family history of heart disease and strokes. But this report does suggest that I should take a more proactive approach.

LisaPizza's picture
LisaPizza
Posts: 343
Joined: Feb 2018

The full study article is interesting. It's subject to many limitations and the article discusses that too. Still, seems rather relevant to us. Below are excerpts that pertain directly to endometrial cancer. 

 

"We observed that from the point of cancer diagnosis forward into survivorship cancer patients (all sites) are at elevated risk of dying from CVDs compared to the general US population. In endometrial cancer, the first year after diagnosis poses a very high risk of dying from CVDs, supporting early involvement of cardiologists in such patients."

 

"In Take home figure, we observed that relative to the average SMR for all 28 cancer sites, endometrial cancer has the greatest risk of mortality from heart disease at all time points following diagnosis."

 

"Of particular importance would be future studies addressing early cardiology evaluation and how aggressive cardiology care should be in cancer patients. Such studies of interventional cardio-oncology following cancer diagnosis might focus on cancers of the larynx and endometrium as these patients have a good cancer prognosis but relatively high risk of CVD mortality, particularly in the first year following diagnosis."

 

https://academic.oup.com/eurheartj/advance-article/doi/10.1093/eurheartj/ehz766/5637730

 

Also an interesting editorial about the study:

 

https://academic.oup.com/eurheartj/advance-article/doi/10.1093/eurheartj/ehz781/5637731

 

MAbound
Posts: 1153
Joined: Jun 2016

My first reaction on reading this thread and the article, especially since I'm almost 3 years out from treatment, is "Oh, crap, not another specialist!". I've gotten excited about having fewer doctor appointments since cutting back to 6 month follow-ups alternating between my gyn-oncologist and regular gynecologist who are part of the same practice. That translates into three less doctor appointments per year and has me doing my happy dance and not too enthusiastic about adding a new member to my team. We all have to die from something, right? I think I'd rather go quick from a heart attack than go slow from a recurrence, to tell the truth.

Am I crazy? Maybe. But this article, if nothing else, serves as further motivation to be careful about my diet, weight, and exercise for this concern as well as the cancer coming back. I'm still working on getting off what I gained while on megace. I think my PCP is watching for symptoms of CVD, anyway, because of being on Metformin for diabetes now, but so far my lab work otherwise looks good. Do I really need to go to a cardiologist, too? 

I think I will messege my gyn-oncologist with a link to ask his thoughts about going to see a cardiologist. That might carry more weight with my PCP than if I bring it up with him given what I know about my current heart health indicators. Given that there are some limiting factors to the study and that there are as yet no other studies that replicate the results, I don't think what we are reading here is a one-size-fits-all recommendation, but is rather food-for-thought based on our individual health situations such as the endometrial cancer along with family histories and other existing health issues.

Studies always need to be read with a bit of skepticism because there is a lot of junk science out there. This is a good study, but it is just one and has acknowledged limiting factors. It may carry more weight (at least with me) in the future if subsequent studies can address its limitations and get similar results. 

 

janaes
Posts: 800
Joined: May 2016

MAbound

I thought some of the same thoughts you did. I dont want to worry about having a heart attact at age 47. My family doesnt have a history of heart deasese. After reading that article I thought great most of my my family lives a long time (all grandparents died at 80 plus years or more) but because i had cancer i will be the one that wont.

So thats just it. Just MABound said we are all going to die some time. I too am trying to not go tovthe doctors as much. I to graduated to my six mounth check ups. Really excited about that too.

All due respect. I think i will wait until this spring when i see my PC to think about neat deasease.

 

LisaPizza's picture
LisaPizza
Posts: 343
Joined: Feb 2018

The study or commentary make the point that some of the risk is due to heart disease and some cancers sharing lifestyle risk factors, and that diet, weight, exercise, etc. are definitely a prime target. It's not a new guideline sending us all off to cardiologists, it's an observational study intended to direct further focus and research. Also, most heart disease, and even more so heart disease risk,  is managed by primary care anyway, unless severe/complicated, or invasive intervention is needed.

 

I wonder if some of the increased risk is due to not managing CV risk or CV disease as aggressively, due to a perceived lack of benefit ... thinking we're probably just going to die of cancer anyway ... maybe a subconscious bias, but there nonetheless.

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

During chemo I had heartburn occasionally – not something I had before or after treatment. So based on the nurse's suggestion, I would take Prevacid periodically.

One night just after I went to bed I started having chest pain similar to that which I got from heartburn. This time, however, it was much worse than usual and I ended up getting out of bed and sitting upright in a chair. As I sat there I debated whether I was actually having a heart attack instead of just a really bad case of heartburn.

I thought about it for a while and decided that I'd rather go fast from a heart attack than slow from cancer, so I didn't seek medical assistance. Probably not the soundest decision and not something that I would recommend to others, but I was feeling really miserable on the Ifosfamide/Adriamycin and not that optimistic about my long-term survival prospects at that time.

If it had happened again, I would have been more proactive, but it never did. And the medications I take have kept my blood pressure and cholesterol levels within the normal ranges so far. But as I mentioned above, I have thought about having another echo to check on my heart function after the Adriamycin.

barnyardgal
Posts: 274
Joined: Oct 2017

I had adriamyacin as well as I was very allergic to taxol and couldn't desensitize. I have a friend who did have heart damage due to this chemo so I was really worried. I had the required echo at the beginning and one at the end. Fortunately all was well but it is a little scary. I noticed this chemo caused heartburn as well. For some reason salty snacks helped. Maybe it was in my head but it worked.

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

In my case, I have had super high cholesterol (hereditary) and have been on statins for 25 years which barely keep it under control. After a life time of low blood pressure, I developed high blood pressure at the time of my cancer dx, which my cardiogist dismissed as “ white coat syndrone”, insulting, and untrue. My blood pressure is great now with medication. To round out the trifecta, I have had bradycardia for about ten years with my heart rate in the low 40’s, which everyone except my wonderfful dentist has ignored, because I don’t faint. The most common response to the low heart rate is, “oh, you are an athlete?”. To which I respond trying to hide my excess chubb, do I look like an athlete that would have a low heart rate?, which shuts them up, but then do not offer any treatment. This study will now force me to pay more attention to my heart health as there is a history of stroke in my family. I would not mind dying imm from a heart attack, but having a devastating stroke is what I fear. My mother had a terrible stroke at 62 and spent the last years of her life half paralyzed, totally disabled and suffered for from vascular dementia. It is a horrible way to die. Stroke is what I fear. 

MAbound
Posts: 1153
Joined: Jun 2016

Bradycardia is also called heart block, of which there are different types or degrees. They are all caused by issues with the electrical conduction in the heart as opposed to problems caused by poor blood supply to the heart. Precisely which you have would be diagnosed by an EKG which you probably at least last had prior to your surgery because it's a test required for every hospital admission. Here's a link that describes them:

https://www.hrsonline.org/patient-resources/heart-block

You may want to ask at your next doctor visit which kind your last EKG showed to understand if the do-nothing treatment is the right one for you or if you have the kind that can eventually progress to needing a pacemaker. It sounds like you have the former, but you need to have confidence that your doctor is keeping a watchful eye on the situation and not being dismissive. 

I have fight bundle branch block and my husband has left bundle branch block. I've learned that those are both conditions that just about everybody gets as a part of aging and that they are no big deal. Nothing is done for such a diagnosis, either.

I'm with you about the fear of stroke. It's an awful, prolonged way to go and a great burden to family members. One concern I'd have about such a slow heart rate even if you are not fainting is does it increase your risk for a blood clot that could cause a stroke? It would be an interesting question to ask or research.

Your comment about white coat syndrome is interesting because my husband has that. It's a real thing and not meant to be insulting. It just means that he usually gets his blood pressure checked a second time just as they are done with his physical to get a more accurate reading. He's generally a lot less anxious at that point. 

barnyardgal
Posts: 274
Joined: Oct 2017

Regarding the slow heart rate, my father has.that with his afib. His cardio put him on asprin as he wasn't concerned about since dad's blood pressure is also low. He had a very mild stroke about 2 weeks ago. He has fully recovered with no issues but the new cardio he has put him on eloquice.

LisaPizza's picture
LisaPizza
Posts: 343
Joined: Feb 2018

Minor quibble, but bradycardia is not synonymous with heart block. Heart block is just one of the causes of bradycardia. And I don't think ECG is a requirement for admission, or even for surgery. I didn't have one for either. I do have that stupid white coat hypertension, almost always need the second BP take. Better than having the real thing though!

MAbound
Posts: 1153
Joined: Jun 2016

Good point and thanks for pointing that out. It's just what came to my mind when she mentioned not fainting because when my dad started falling he was diagnosed with third degree heart block and got a pacemaker. I hate incomplete information, so I needed to be called on that. Thanks.

Some other things that can cause bradycardia can be: aging, heart disease or heart attack, congenital heart defect, heart infection, heart surgery complication, hypothyroid, electrolyte imbalance (potassium, calcium, sodium, magnesium), sleep apnea, and some medications.

I can't imagine what kind of shape an athlete would have to be in to get his/her normal heart rate down into the 40's, but I guess I have to accept that just like I guess I have to accept that maybe not all hospitals require an EKG as part of admission testing! That one surprises me because I'm so used to everyone covering their butts. Will wonders never cease?!

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

Thanks for great input. I have had my internist, two cardiologists, one a Mayo doc, look at my ekgs and a full pre-op workup at Mayo prior to surgery which included another ekg, chest x-ray, blood work etc. My ekg has been normal each time, except for the slow rate. They had to make sure that I could tolerate the anesthesia and not have my heart stop. A few months later a Mayo cardiologist gave me a Holter monitor test which also was normal. Since I have no symptoms, they are just monitoring it. Concerning to me was that chemo made me very short of breath, dizzy, and lethargic (I never fainted), the same symptoms as bradycardia. All have resolved and my heart rate is still low. My dentist takes vitals at every visit (Dental faculty practice) and she is always alarmed at my heart rate of 42, or 45, but they say it might be normal for me ( I have had it for at least 10 years) and normal for an older person to have a lesser rate, I am 69. It is nothing to fool around with, for sure, I can take my heart rate using a phone app with great accuracy, so I do that daily. 

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

Sorry if I was not totally clear with my description of my condition and treatment. I was glibly describing my frustrations with the bradycardia because even though I had been given two EKGs and cardio workup prior to surgery, apparently nothing is actually wrong, and other EKGs in prior years.  It is a scary condition that is simply being monitored. Spring 2018 was a perfect storm for me due to spiking BP, bradycardia and eventual dx of cancer and surgery. My low heart rate was freaking me out and it seemed at the time that only my dentist was concerned about it! She and I now joke about it, but she is still concerned. So I may have left the impression I was not being monitored, but I am. I totally get how people can have WCS, it is very common, but my cardiologist was a total idiot. He never looked at my current BP reading before making that comment that I had WCS, so he didn’t know that despite coming to see him my BP was normal. I was so nervous to see him that my BP zoomed all the way to normal? He was dismissive and condescending and I never saw him again. He did not want to prescribe BP medication, which my internist disagreed with. Since being on medication I no longer have any spikes and have very normal readings. I just have some frustration that the bradycardia is apparently normal for me and it freaks me out because when a new doctor sees me they are always concerned about it, but there is nothing to be done at this time. 

Denise

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2915
Joined: Mar 2013

Great article and discussion.  I'm with MA about being more aware of diet and exercise as I was dx at 49.  Prior to surgery they ususally do a chest x-ray on those above 50 so I thought I would skate on it, but the doctor ordered it. Never a dull moment in our lives, that's for sure. 

MoeKay
Posts: 350
Joined: Feb 2004

I am treated for hypertension, but I was also diagnosed by the Director of UPenn's Hypertension program with white coat hypertension.  Of course, hypertension should not be ignored, but it also should not be overtreated as excessive hypertension medication carries its own risks, including life-threatening falls.  Because I have both conditions, I will not agree to any change in my hypertension medication unless I have had a recent 24-hour blood pressure monitor test.  When I am tested at the doctor's office, my readings are typically high and volatile.  When I wear the 24-hour monitor, my readings are for the most part normal during the waking hours and low (80s or 90s over 40s or 50s) during the sleeping hours.  If I had been given additional BP medicine based solely on office readings, there's a good chance I would have passed out on my way to the bathroom at night.  I feel even more strongly about this issue, as someone I know fell and hit her head and died earlier this year.  Don't know if it was medication-related, but falls are serious business.  

I didn't see that any of the above posts mentioned 24-hour blood pressure monitors with respect to high blood pressure, so I thought I would raise what I believe to be an important issue.  For those of you who may not know, the monitors I've worn take readings every 15 minutes during the day and every 30 minutes at night.  Then averages are calculated (overall average and day and night average).  I always find the results interesting and informative.  It's fun to see if I can relate particularly stressful events that happened during the day I'm wearing the monitor to increased readings in the overall test results.

 

LisaPizza's picture
LisaPizza
Posts: 343
Joined: Feb 2018

I want one of those too if someone tries to put me on a medication (not that I expect that soon). They recently lowered the upper limits of normal BP, but they don't recommend medications for "elevated" BP. 

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

Thanks for your input. In the spring of 2018 a month or so before dx with cancer, my blood pressure was spiking, daily, but was almost normal at other times. I had purchased a high quality blood pressure cuff and upon the advice of my internist was taking my blood pressure twice a day. I was not on blood pressure medication at the time, had many doctor’s visits during that time to figure out the gyne stuff, sudden high blood pressure, and my normal physical, blood work. etc. so I had many BP readings, high and normal. I have been on baby aspirin for about 10 years. During this time my cardiologist ordered a stress test, which had to be stopped due to the fact I started out with the highest BP numbers I have ever had. The results were inconclusive. The cardiologist wanted me to have the 24 hour BP test but I refused as I sleep so poorly that I knew that the every 20 minute reading would keep me up all night and my readings would be skewed by lack of sleep. He pooh poohed me, said that I had WCS, even though when I pointed out that my reading taken by his nurse was normal just minutes before, he admitted he did not even look to see what my BP was by his own nurse. (I got rid of him) So almost normal BP when I am seeing my cardiologist, yet he said I had WCS. BS. So I was put on BP medication by my internist and my readings are back to my lower normal readings. Before BP medication, with my many visits to various docs, my BP could be normal or spiking. Now, no high readings at doctor visits or any other times. Of course immediately after that started on the road to cancer dx, hysteroscopy, hysterectomy, chemo, radiation, and my BP has been under control for the most part. With this new study and my constellation of issues, and NED, I will ask them to do a full cardio work up because now that I am not actively being treated for cancer I have been concentrating on the health issues that have been put on the back burner. (cataract surgery for one)

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Along this thread, I've had high cholesterol my entire life and been on a statin about 30 years. Lately I'm not tolerating the statins and getting severe muscle cramps (I've been on them all). My dad had a heart attack at 43 and of course I had the stroke when I was on chemo. And of course now that I have diabetes, I have the trifecta (high blood pressure, diabetes, and high cholesterol) for cardiovascular disease. My endocrinologist requested and got approved Repatha which is a twice a month injectable cholesterol lowering drug that's supposed to be quite effective. 

Needless to say, I really don't want to add yet another med to my already heavy drug regime, especially an injectable that will cost me even after my Part D insurance $94/month but I'm feeling like I have no choice. Diet and exercise (short of becoming a complete vegetarian and exercising my *** off) have not been effective at lowering it in the past. Probably a genetic factor. 

I'm inclined to give it a try. Anybody have any experience with this drug?

Tamlen's picture
Tamlen
Posts: 319
Joined: Jan 2018

I was just diagnosed with familial high cholesterol -- 204. My cardio-oncologist tells me that once it's over 200, it's likely genetically driven and I can exercise 'til I drop (and I'm already vegetarian for 30 years and was a serious runner for decades until chemo and exemstane ruined my joints) and it won't make a difference, that only drugs can help with familial high cholesterol. She proposed Repatha to me since regular statins have joint pain side effects and I'm already experiencing pretty significant joint pain from the aromatase inhibitor. She said Repatha doesn't tend to have that side effect and she's seen really good results with it. I asked if it had been heavily studied in women as well as men, since so many drugs haven't been, and she said it had. I'm not sure how I'm going to proceed but will be interested in following your story if you go with the Repatha.

MoeKay
Posts: 350
Joined: Feb 2004

Hi Cheese, have you tried any other medications besides statins to lower your cholesterol?  I've resisted statins for a variery of reasons over the years.  Recently my cholesterol was higher than it had been in the past, and my doctor knew my position on statins.  He told me that his wife has had success with Zetia, a drug designed to block absorption of cholesterol.  I researched Zetia and saw that one of the side effects was diarrhea, which I did not want to risk, given that I also have microscopic colitis, which causes intermittent loose stools.  My research led me to colesevelam, a bile acid sequestrant.  One of the potential side effects of colesevelam is constipation, which has never been a problem for me since my cancer treatment 20 years ago.  I ran it by my primary, and he agreed to let me give colesevelam a try.  I haven't had my cholesterol tested since I started on the colesevelam, and I'm currently only taking 2 pills a day, which is about 1/3 the maximum dose (4-6 pills a day).  If my cholesterol is still too high after my next blood test, I plan to ask my doctor to increase the colesevelam to 3 a day and work my way up from there. 

I'm not sure how high your cholesterol is, and while these other cholesterol-lowering drugs may not be as effective as a high-dose statin, they may be worth thinking about before going the injectible route at close to $100 bucks a month. 

Wishing you the best. 

Tamlen's picture
Tamlen
Posts: 319
Joined: Jan 2018

Well, no statins for me, apparently. My cardio-onc decided to try me first on Crestor before going the Repatha route. Within 30 minutes of taking the first pill, I had a strong allergic reaction -- itchy hives everywhere. Sigh. I am allergic to more drugs than I'm not allergic to.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Not sure I would be interested in taking that many pills on top of what I already take. Apparently Repatha is highly effective very soon. There's a new prescription fish oil, but that's out of the question due to the eliquis. I'm on so many meds, it's hard to find something with no interactions. 

MoeKay
Posts: 350
Joined: Feb 2004

Zetia, the cholesterol-lowering medication my doctor's wife takes, appears to be one 10 mg. pill once a day, based on the information I found online. 

christine8822
Posts: 41
Joined: Mar 2016

Hi, I am 4 1/2 years out from diagnosis and treatment of stage IIIC endometrial cancer. When I showed my primary doctor last year the new study showing that endometrial cancer survivors were 50% more likely to be diagnosed with cardiac issues up to 10 years after treatment, she sent me for a baseline Echocardiogram, which turned out to be normal. However, I feel better having had that as a baseline in case anything develops in the future.

The doctors took it seriously because this study was published by the Journal of the National Cancer Institute. This report sums up the hair-raising findings: https://www.ascopost.com/News/58818

Good luck everyone. 

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

I have a new primary - my fourth since moving to Florida two years ago but I think I finally found one who listens to me. My BG has gone from 25 years of below 6 (5.9 on 7-3-18) to 8.3 this past September. Something is wrong - big time! I haven't gained weight (lost a couple of pounds even) or changed my diet. She is having me keep a food diary and check my BG four times a day. The results so far have shocked me - even with taking 2000 mg of metformin every day, my BG runs from 220 to 290 NO MATTER WHAT I EAT. It makes no difference if I've fasted for 17 hours or just eaten two hours before - same results. Also, my blood pressure was 108/60 with 20 mg of lisinopril daily and as always, my cholesterol was well within normal parameters but the triglycerides were still high with 20 mg of simvastatin. I am also starting to get severe muscle cramps even taking magnesium, potassium, and drinking electrolyte fluid replacement.

Since my brother died of a massive heart attack at 37, my father at 57 and my mother had her first heart attack while in her 40s, my heart is constantly monitored. I told this new doctor I was more concerned about the quality of life than the quantity. My neuropathy is getting worse and I attribute that to the high blood glucose levels. I do NOT want to go off the metformin as I believe it has kept the UPSC from metastasizing but do want to consider adding long-acting, once-a-day insulin. I've come to the conclusion that my diarrhea is chronic and the only thing that helps is Imodium - a temporary fix, for sure, and adult diapers, just in case. 

I feel like I'll always be dealing with the less of X amount of evils. I am extremely lucky the UPSC has not come back (was four years last September) but when you're at the grocery store and your muscles are cramping so bad you're down on your knees and your adult diaper starts to leak and you have to take off your shoes because you're sure somebody just stabbed you in the foot, it's hard to feel lucky - LOL!

I go back to the new doctor on February 11th and we're going to review all my meds based on the lab results and my blood glucose chart. Hopefully, she'll work with me to prioritize what's the most important to control because like the Queen of Cheese said, so many drugs interact.

I'm so glad I have you all - nobody understands this like you ladies do!!!

Love,

Eldri

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Hey Eldri:

Sorry about your blood sugar whoes but it's important to remember that diabetes changes over time and perhaps the metformin just isn't cutting it anymore. I'm fighting the Megace and it's a constant battle because I'm always starving!  I'm doing pretty well on one injection of Tresiba (a new long acting from Novo Nordisk in a pen) and a really old drug Prandin which I take with meals ( a pill, also from Novo Nordisk). I've had to work my way up to 32U of insulin but so far this is working for me. Now on to the Repatha. My copay will be $177/ month. Haven't pulled the trigger on that yet but have not been tolerating statins either. I'm tending to wait til after AZ vacation in case of side effects. Hope I last until then. Good luck. 

MoeKay
Posts: 350
Joined: Feb 2004

Hi Eldri, I'm glad you've found a new primary who will be working with you and reviewing all your meds.  While the most common side effect of statins is muscle pain and cramping, they can also cause an increase in glucose level and diarrhea.  The potential diarrhea side effect was one reason for my declining a statin and opting for colesevelam for elevated cholesterol.  Colesevelam, a bile acid sequestrant, can have the opposite effect on the bowels, which I would welcome.  I have microscopic colitis (unrelated to cancer treatment) and had radiation, so I don't need anything that could potentially further increase the risk of diarrhea.  Perhaps your new primary will come up with another way to address the cholesterol issue, so you can see what happens with the sugar and diarrhea as well. 

Good luck at your appointment in February, I hope your new primary comes up with some great options for you!

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

Eldri,

I'm glad you finally found a doctor who may work out for you. I know it's been a struggle.

When I was first diagnosed with Type II Diabetes, my doctor told me that it was a progressive disease, although the rate of progression varied by person. I was able to control my blood glucose levels with just diet and exercise for about 12 years. When that stopped working, I started taking 1000 mg of Metformin. That kept me stable for about 4 years until about a year ago, when I was suddenly in the 8.1-8.2 A1C range. I increased the Metformin amount by 500 mg three times, but the A1C remained stubbornly high.

While my diet was wasn't bad, I decided to really focus on reducing the amount of starchy/refined carbohydrates starting last August. This worked to bring my A1C back down to 7 and also had a side benefit of losing 15 pounds. I'm still taking 2000 mg Metformin. I'm hoping that the A1C will drop back into the 6 range that it's normally been in. But I expect that eventually the diet modification will also stop working and I may need to add or switch medications.

I do take a statin and ACE inhibitor – the later more for protection of my kidneys than for high blood pressure. But with a family history of heart problems, they're another proactive step of protection.

My gastroenterologist prescribed Dicyclomine for me last spring when I was complaining about persistent stomach aches (a CT-scan didn't show a cancer recurrence, which was what I initially feared). This has basically solved the stomach aches and decreased (although not eliminated) the bouts of diarrhea I've had since starting Metformin and post cancer treatment. You may want to check with your doctor if you haven't already tried one of the gastrointestinal medications to see if one would help your diarrhea problem. I started at 20MG per day, but found that 10MG once a day was enough for me.

shamayim's picture
shamayim
Posts: 22
Joined: Aug 2015

I am an anal cancer survivor and a year after my treatment I suffered a massive heart attack.   I had a previous echo that showed things were "fine".  Just do your diligence because my heart has left me in much worse shape than my cancer has(so far).  I dont know if the chemo had something to do with it- I'll probably never know, but I never dreamed it would be happening to me.  Infact I thought it was a gallbladder problem until the ER doctors ran my labs and it became apparent I was in cardiogneic shock and near death with a 100% blockage-- the widowmaker!  In June I will be 5 years out from cancer.  I have not been as focused on my cancer because my heart is in such serious shape.  Do what you need to do to try to keep your heart healthy.  My cholestrol was so low I really considered stopping the statin(due to crippling muscle pain side effects) except my cardiologist said "0" would be an acceptable number for him.  I didnt qualify for repatha because my cholestrol was so low.  They want absolutely nothing possibly clogging my arteries.  I have an ICD implanted in my chest to help me in case of sudden cardiac arrest.  I dont really have famiy history of heart attack like what happened to me.  Heart problems with cancer survivors should be a very real concern.

takingcontrol58
Posts: 263
Joined: Jan 2016

Eldri,
I know you have been using metformin like I have. Metformin sucks Vitamin B12 out of you- your body doesn't
absorb it.  I have been supplementing every day with B12 for five years now.

It is very possible if you haven't been supplementing with B12 and monitoring those levels regularly,
you might have very low levels of B12. It is believed low levels of B12 can cause hyperglycemia so it
could be causing your high blood sugar. Low B12 can also cause muscle cramps.

Low Vitamin B12 levels are also tied to the development of peripheral neuropathy. I'm wondering
if neuropathy is tied to diabetes because most people take metformin which lowers levels of B12
(and most doctors never tell their patients to supplement and monitor their levels).

Also, B12 is essential for cardiovascular function.

If you are not supplementing with B12, or even if you are, you should ask to get your blood tested for B12.
And you should test for it regularly since you are on a high dose of metformin.

Takingcontrol

 

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