Endo cancer and cardiovascular death

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?

CheeseQueen57 said:

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?

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. 

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. 

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

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.

EZLiving66 said:

I have a new primary - my

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

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!

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