What A Concept!

I met with a pharmacist yesterday or a pharmacologist. It was great. When I had my annual physical with my primary care doctor in September, she was concerned about my medications and interactions.

The pharmacologist went through my entire list of medications - prescription and OTC - and asked why I was taking each one. Then she went through and looked up possible interactions with them. She gave me some advice which I found very helpful.

• Because I am on Prilosec for GERD from a sliding hiatal hernia, I need to take it in the morning, 30 minutes after my thyroid medication and then wait another 30 minutes before eating. I was taking it in the evening.
• I also need to get off prednisone for my RA.I am on a low dose but its not a good idea to stay on it long.  I will stay on it until January when my hopeful new RA medication will kick in and then I can ditch it.
• As my pain management doctor has already suggested, and I really want to do, is to reduce my Lyrica dosage or even get off it. My previous pain management doctor, if I said I had pain, he would say, 'let's increase your dose'. But he never gave me any information why or requested any scans or testing. This is why he is no longer my doctor. I meet with my pain management doctor next week. 
• I also need to change my Calcium with D to calcium citrate not calcium carbonate - something I completely blank out on when in the store.

Also, I am only on about four medications for the side effects of other medications. We had to laugh at that. 

At the end of the appointment I felt very good. A knowledgeable neutral party had looked at my meds and found that I need to be on the meds I take. I need to be careful about some interactions and see if I develop any symptoms and cut down if needed. 

I feel like I should do this every five years or so. I feel that not all doctors look at what other medications I might be on before prescribing something new.  A good experience, for once.

Back to Breast Cancer Stuff

(So my plan is coming together and my life goes back to reflecting on breast cancer crap.)

Earlier this week, the FDA approved a new medication to be used with Letrozole (Femara) or other aromatase inhibitors for hormone positive metastatic breast cancer patients. This medication (which I can't pronounce and just think of it as the 'kis...') is called Kisqali (chemical name: ribociclib). It works similar to Ibrance... Not that that means much to me but as a reference.

My real concern is the cost. Ibrance costs $9850/month for treatment. Not cheap. All new cancer treatments seem to cost so much. 

But I am pleased to learn that Novartis has developed a flexible pricing plan for Kisqali;

"The med—a first-line treatment for HR-positive, HER2-negative breast cancer that will compete with Pfizer’s Ibrance—will roll out as early as Tuesday under a flexible pricing structure, the company said on a conference call following Monday's FDA approval. A 28-day supply of the 600-mg dose will cost $10,950, while the same supply of the 400-mg dose will go for $8,760 and the 200-mg dose will run at $4,380."

My hope is that now there will be some price competition between the two. Not that many stage IV cancer patients do much price shopping while looking for treatment but maybe the insurance companies will.

However, the best thing is that more cancer drugs are being developed and are finally hitting the market. 

Why Bother?

For some reason I have had a similar conversation with different women on the same topic: why take tamoxifen or aromatase inhibitors after initial breast cancer treatment. Aromatase inhibitors are Arimidex (anastrozole), Aromasin (exemestane), and Femara (letrozole)

The conversations all boil down to:

• What if I get side effects? They have heard they are awful and could cause them some real problems. But if you don't even try them how will you know if you will experience the side effects?
• What exactly do they do? They don't really understand that they would reduce their recurrence risk by being on them
• Why do I have to be on them so long? It used to be five years and now new research has come out to say ten years is better. And more research is going on that may lead to even longer treatment periods

[As I write this, there is a commercial on TV for Botox for migraines. Botox is botulism, which is a very nasty germ...]

I have had friends who do the same thing with their medications.They over think them and won't take them because they have heard that the side effects might be bad. Or the withdrawal from the drug could be bad. 

You won't know if you might get side effects if you don't try the medication. And you won't get the potential benefit from the medication if you don't take it. How is your doctor supposed to treat you if you won't even try their recommended medication?

I Was Too Busy To Blog

Its the truth. I was too busy to blog. Tomorrow we are hosting Thanksgiving dinner for the first time. My mother, after 45 years of hosting Thanksgiving, has decided that she wants to go to someone else's house for dinner. Now I do admit to doing a fair amount of the cooking for the past 30 years or so, but its the first time at our house. In our new house with its big living room and open to the kitchen dining room which is why we now can host. In our new house with all my health ailments.

That's okay, my husband helped a lot and I can always take a nap if I get tired. Since I have cooked, I do not do dishes.

So anyway, today I have:

• brined the turkey
• chopped celery and onions for two kinds of stuffing
• chopped vegetables for veggies and dip
• made a pecan pie
• chopped the Brussels sprouts
• Set up beds for four guests after finding the sheets, pillows and blankets
• Went to Michaels (for a frame for the picture that should have gone on the wall weeks ago), the grocery store (for butter - you can't make Thanksgiving dinner with two sticks of butter, bagels and cream cheese), and the drugstore for my two prescriptions that I needed. 

I still have to:

• Make the dip for veggies and dip
• Wash and trim the green beans
• Set up our pill boxes for the next week
• Order take out for dinner
• Make a second dinner for our house guests that will show up around 9pm.

So all that being said, I am exhausted (but don't tell my brother or husband or they will start telling me what to do all the time). I need to take care of our pill boxes and go to bed early. And sleep late.

With my health ailments (and even before then), I do not do well with not enough sleep. I need sleep, I need sleep, I need sleep. Last night I was so tired I fell asleep before taking my giant pile of nighttime pills. I did wake up in the middle of the night and took the important ones which won't mess up with my morning pills (some need to be spaced out). 

But I digress. I do not want my health ailments to interfere with my enjoyment of Thanksgiving. I want to be able to enjoy spending time with everyone. After I sleep and take all my pills. And delegate more cooking stuff.

Coping and not coping

Finally this morning I have an appointment with my meds therapist. The week I fell and was home with my 'concussion' I was emotionally a mess. I have found I do not do well with staying home for day after day.

My husband works full time and if I don't leave the house, he is the only one I see for a few hours each evening, I feel very isolated. I need to see other people at least every other day.

My socialization is planned. People need people. I think I especially need to see people and socialize. I was concerned about this when we moved out here and I stopped working.

I planned my schedule to go to the gym Monday, Wednesday, and Friday so I could go out and see people. When I go to the gym, I end up chatting with many people. I think most of there go to socialize as well as work out. Tuesdays I am home and often have lunch or socialize with friends. Thursdays I go to my knitting group.

This isn't the first time I have felt all alone and gotten depressed. But it was the worst. I think because I was home for basically a week by myself. I felt awful, was tired and had to sleep. I was not able to go places and get out of the house with out total exhaustion creeping in.

I was upset and I tried to see if I could get into see my meds therapist sooner than February. But no. Her next appointment was April. I tried to send her a message directly but didn't hear back. So I decided to call her secretary to ask for a prescription or something. It turns out she had a few cancellations and she could fit me in today.

I want to talk to her about how to avoid depression and isolation when I can't get out of the house.  I am sure with my house this is not an infrequent event. I need plans to avoid the stress and depression.

To clarify I am not a massively depressed person. But with every medical set back I seem to lose my ability to cope more and more. If I was a healthy person and able to do everything I enjoy, like hiking into the woods or skiing or..., I might be less depressed.

How Much Pain?

Yesterday I found a stupid list of a series of doctor office signs. Of course I had to read it because the first one caught my eye, and share it on Facebook (because I have nothing better to do).

Last night we went out to dinner. For some reason the kitchen was backed up and we were sitting in uncomfortable chairs for 45 long minutes between when our appetizer and salads were finished and our entrees arrived. During that time, my back started hurting to the extent that I could barely walk.

Basically it felt like I had stepped on a Lego.... That was stabbing me in the back. The next time you step on a Lego, pretend that is going into your back and you will begin to get the idea of how bad my back is. If you have never stepped on a Lego, go buy some and walk on it barefoot to get a comparison. (Are there people out there who have never stepped on a Lego?)

Personally I believe this is a much better scale than the basic 1-10. Who can define what is a ten pain? That little frowny face doesn't quite do it for me. Nor do some of the others I have seen. I know I have blogged about this pain scale thing before but I am too lazy to find them (because my back hurt so I didn't sleep that well). (I have rights too!)

I have a goal today. I will take my nieces and nephews to the beach so I can float around so my back will hurt less. And I will take my good drugs.... with a Tylenol Arthritis (an amazing OTC) to help get it back in line.

Sooner or later, I will be able to pry the piece of Lego out of my back.

Would You Inhale?

We know Bill Clinton did not inhale but Barak Obama did inhale (because that was the whole point). I might have inhaled in the past but would never consider it now. All my past experiences involved smoking and occasional batches of brownies.

One friend told me that she asked her doctor about it and he told her it wasn't appropriate for her. She thinks she could go off all her other medications if she could go to pot. Another blogger recently revealed her problems trying to determine how much marijuana was contained in cookies she purchased.

Medical marijuana has been looming outside of my wheelhouse recently. I have heard it could help my pain levels and other issues but I have never really followed up with it. But its appeal is slowly growing.

I have thought about marijuana and its benefits but the whole idea of smoking at this point had zero appeal. Then I learned you can cook with it, brew it, and bake it. That has more potential. I could see drinking pot tea for its benefits. I could see making some cookies with it or maybe a bowl of soup....

I also found that these are the benefits of medical marijuana:

1. Weed can be used to treat Glaucoma. 
2. It may help reverse the carcinogenic effects of tobacco and improve lung health. 
3. It can help control epileptic seizures. 
4. It also decreases the symptoms of a severe seizure disorder known as Dravet's Syndrome. 
5. A chemical found in marijuana stops cancer cells from spreading in the lab. 
6. It may decrease anxiety. 
7. THC may slow the progression of Alzheimer's disease. 
8. The drug eases the pain of multiple sclerosis.
9. Other types of muscle spasms could be helped too. 
10. It lessens side effects from treating hepatitis C and increases treatment effectiveness. 
11. Marijuana treats inflammatory bowel diseases, including Crohn's disease. 
12. It relieves arthritis discomfort.

 
13. It keeps you skinny and helps your metabolism. 
14. While not really a health benefit, marijuana spurs creativity in the brain. 
15. Pot soothes tremors for people with Parkinson's disease. 
16. Marijuana helps veterans suffering from PTSD. 
17. Marijuana protects the brain after a stroke. 
18. It might protect the brain from concussions and trauma. 
19. It can help eliminate nightmares. 
20. Weed reduces some of the awful pain and nausea from chemo, and stimulates appetite. 
21. Marijuana can help people trying to cut back on drinking.

I particularly like #5, 9, 12, and 13.  I also like the idea of 14 and 19. All the others sound good too but are not appropriate for me. 

Maybe its time for a cup of tea or a batch of brownies....

Talcum powder and other safe ingredients

I have seen some crass ads recently about 'if you used talcum powder and got cancer, you need a lawyer'. I had no idea what they were talking about it. Until I saw an article about how Johnson & Johnson has lost yet another lawsuit regarding talcum powder.

Supposedly talc is a carcinogen and if you used J&J baby powder it could have caused your ovarian cancer. J&J of course claims that it is not. But now lawyers are involved and it is in the hands of the courts. Since J&J has now lost two cases, it does not look good for them.

This brings me to the issue of supposedly safe ingredients that turn out to be really bad for you. If you think about it, this has been going on for eons. Think about what used to be in so called 'patent' medicines. Everything thing under the sun. Many of them were found to be harmful or even fatal.

Now in modern times, the lawyers run everything.

But the harm has been done. I used to use J&J baby powder regularly. Is that why I got cancer twice? I give up. I have no idea why I am so 'healthy' but I will assume talcum powder is not what did me in.

I Have A Problem

Since we moved, I have found I am incapable of keeping on top of my medications. I have:

• forgotten to get refills on time
• forgotten where I put my refills
• forgotten to call in refills

I have even forgotten my husband's (only) prescription and had to pay out of pocket because I didn't get the preapproval done.

This is turning into a real problem. I have been having a problem for months with increased pain in my hands and feet. Now my back has been more of a problem as well. It turns out I completely forgot to get my prescription anti-inflammatory refilled. No wonder I have been having more pain.

In our old house, I had a system. I kept all the prescription bottles on the top shelf of the closet closest to my side of our bed. Every week I sit down and refill our pill boxes. I put all the bottles in two rows on the bed, prescriptions in one row and OTC (mostly vitamins) in the other row. Then I fill my husband's pill box with his prescription, move on to the OTC we both take, and close his box and put it aside. Then I go back to my pill box, adding all my prescriptions and then the rest of the OTC items. 

If I empty a bottle or nearly empty a bottle, I put them aside until I am done and then I get a refill or replacement as needed so by the next week we have all the pills we need and we never run out.

At our new house, first we were very disorganized and there is no closet near my side of the bed. I kept all the prescription bottles in big zip lock bags on the floor in the corner. After a few weeks, I found a little book case, which doesn't hold books, to hold all my bottles. I keep everything there. Then one day a week, I put all the pill bottles on the bed, prescriptions in one row and OTC in another. I sit down and fill all the boxes as before. Sounds good? 

Well for some reason, I keep screwing up. I don't know if its because of more RA problems with my hands or that I am not focusing or something, but each week I find as I go through the week, that my pills are messed up. Sometimes I am missing one in a box, or have an extra in another. Or I find that I have missed a pill all week.

This morning I realized that perhaps one reason why my hands haven't been very good is that I have not been taking my prescription anti-inflammatory pills. I don't even have a bottle for them. I checked online and found that I haven't refilled it since late January which makes sense why I am out now. But I have no idea when I last took it. Anyway, I sent in a request for a refill and will pick it up later today. 

However, the real problem is that I need to fix my system so I stop screwing up. I need to do something because I really have to be sure I am taking everything I should. AAARRRGGGHHH!

Take your pills

An every day conversation with my husband:

Me: "Did you take your pills?"
Him: "Let me check. No"

And my lessons from last weekend stand by me.

I am not alone. Drug companies are creating programs to help patients take their pills. Yes its part of a money making program. The more people who take their pills the more they can sell - as the cynical side of me says. But the real problem is people who do not take their pills get sicker and sicker. This drives up the cost of medical care in the US. (Which uses up more health care money so big sticker medications are in the spotlight for a smaller share of the remaining money.)

Time to stop being cynical.

Think of it this way, a patient goes to the doctor for an ailment. The doctor prescribes a medication for which the patient never fills the prescription, or if they do fill it, they forget to take it. If they had taken their medication regularly, they would feel better and not need the surgery they eventually had. Medical research is done so that we get better and live longer.

One of the problems is affordability of the medications. Pharma companies have long since had payment options for the uninsured which does help some.

Another problem is that some people get the mind set that no pill will help them. Or other reasons they come up with not to take the pills. Or side effects, fear of side effects, or no perceived effect by the medication. Along with basic forgetfulness - something we all suffer from time to time. A friend hurt her back recently and said she had a bad night the other night and was in a lot of pain - she forgot to take her prescription....

My message is "take your prescriptions as prescribed and if they don't work, cause side effects, or you can't afford them, call your doctor for options."

That was a mistake

Last week I blogged about not taking my pills. I skipped them. That was a mistake. I made the decision two nights ago not to take my pills before going to bed. Then I decided again last night not to. I have since learned that was a big mistake.

Yesterday I had a fair amount of pain which I just pretended was from overdoing things at the gym on Friday. Then I woke up in the middle of the night and a lot of things hurt. So I have learned my lessons.

1. My pills do work.
2. I was kind of stupid to push my limits like that.

But now I know that my doctors do know they are talking about and that I do really have a lot of things wrong with me. Damn. I guess I will have to take it easy today.

But at least I know.

Testing my limits

How often do I look at my box of pills and think 'what if I just threw them all away'? The answer is 'too often these days'.

Okay, I am human and even though I fill my pill box ever week, I am not perfect. Sometimes I forget to take some of my pills. I have to take pills twice in the morning and sometimes I miss the second set of morning pills. Those pills are ones which I take twice a day so if I miss half a day's dose every couple of weeks I figure I am okay.

But what if I skipped the ones I take once a day? I really make an effort not to. I have been known to wake up in the middle of the night (say hello to insomnia!) and check to make sure I have taken them all. I figure once, I could survive. But what if I just stopped them all?

The one pill I know I really need to take every day is my levothyroxine - which is my substitute thyroid gland. I know what happens if I forget that one. One day is fine, two or more days starts to cause problems. I once went on vacation and left my thyroid pills in my hotel in NY before flying to the Bahamas. I started to blow up like a balloon. These are important enough that I know if I ever forget them for some reason, most pharmacists will 'advance' you a few pills, especially if they are part of the same chain where you get your prescription.

I am tempted sometimes to stop taking one or two of them to see how much of an effect they really have on me. I have a weekly pain patch that has shifted from Thursdays to Monday nights after I have gone without it for a bit. Sunday night I was sick of the itching it was causing me so I yanked it off in the middle of the night and didn't put another one on until yesterday afternoon.

For some reason, I have felt like pushing my limits recently. Maybe its a phase. Maybe in some ways I am feeling better? I don't know. I just know I hate being dependent on a bunch of pills to survive.

A little humor this morning.

I am going through a phase where my butt is dragging around because of my stupid RA and adjusting medication levels. I wasn't sure if I would be up for going to work yesterday or today. I did make it through yesterday morning and since I am up, I will go to work for a bit, probably just the morning again.

I need humor to make it through the day.

And I have to ask the question, which would be worse: being allergic to a favorite food or item or having cancer? At this point I am actually leaning toward the allergy thing. If I became allergic to red wine right now, that would really suck.

I'm making a list

I have to make a list because I have no brains. My husband swears that my life is wallpapered with lists.

In early May, I saw my rheumatologist with the goal of doing something about methotrexate. While it has been good at controlling my rheumatoid, it has suppressed my immune system so that I would get a cold that would last 1-2 weeks every two months. I can't be out of commission that often from a stupid cold.

We made a deal where I would wean down my methotrexate for two months and increase my sulfasalazine and wait and see how I do. Well its two months and I go back to see her to talk options. I am not sure this combination has been that good. I have been having a lot of problems with my RA. Damn.

But I am making a list of issues and what to ask about options. Its a long list of issues and I am not sure how many options there are. Double damn.

Damn those pesky blood tests

Yesterday my plan was to go to my therapist and then get some blood work done for my rheumatologist. The hospital switched to a new software program with a new patient interface. I like the interface because I can see all my upcoming appointments and test results and all sorts of fun stuff.

When I saw my rheumatologist earlier this month we agreed to switch around my meds which meant more blood tests. I had made a note of getting my blood work done yesterday but realized I never got any notification on my planned blood work. I decided I should call to find out if they were really scheduled. And they weren't. But because I called, they were happy to put them in the computer.

So I went for my blood work after my new therapist urged me yet again to go to a different support group on how to relax more. This morning I got the result. And they suck. To be honest.

This means my plan to switch away from methotrexate and the forever and ever colds may not work. Damn those pesky blood tests. Damn.

Not so restful sleep

I have lots of problems sleeping. Its tough to have ailments which cause both fatigue and insomnia. So being the good patient that I am, I spoke with my doctors about getting some sleep aids. I was prescribed one and given the caution that it can cause weird dreams. And it does. Yowza!

I get the weirdest dreams with places I have lived piled up on top of each other, with different friends, family members, pets, etc all mixed in together. I wake up feeling all agitated. I cut the dose to half a pill. Then I tried adding some anti anxiety meds, which leave me in need of a nap.

This clearly isn't working. I wake up having slept but with a knot in my stomach. I need a new plan here.

So back to the damn doctor I go. As if I need another doctor appointment.

Strategizing

I think I am finally figuring out how to manage my own health. Call me slow but I am finally getting there. I try to be a good patient. I take my (huge pile of) pills every day and show up for appointments and all that. Sometimes I even try to take a step back and look at the gigantic huge big picture of my overall health.

I am trying to be even more proactive about my health. I know there are on going issues that I need to tackle - lose weight, keep eating healthy, and getting regular exercise. But I am also aware of many other issues that I need to work on. Primarily coping with the side effects of my medications and treatments. That's a big one.

I take methotrexate (MTX) for my rheumatoid. It is also a chemo drug but in lower doses it is used to treat RA and other ailments. One side effect is that it keeps my immune system so low that I keep getting sick. I have had at least two bad colds already this year that caused a week or more absence for work. I am also on two prescriptions for other side effects.

I decided I need to cut MTX out of my life so I talked to my rheumatologist last week about getting off of it. So for the next 8 weeks I am cutting back on it and increasing another prescription which has fewer side effects and shouldn't have as much effect on my immune system. We will see in 8 weeks if I have more RA problems. And if I don't get another bad cold.

I need to strategize (Is that a word? Spell check says not but I'm using it as it makes sense to me.) some more about my health.

I know losing weight would be a big help to me. But I can't exercise more so I guess I need to eat less. I have more upcoming doctor appointments and I have to do some thinking about changes that I might want to make.

Challenging doctors

I think I challenge my doctors. I think they they I am going to fall apart on them or something and I am not that easy to treat. First of all, I am allergic to all the good drugs - penicillins, Benadryl and prednisone, plaquenil (treats RA), codeine, and a couple other things. I even had one doctor say to me that I must be really fun to treat.

If I have an allergic reaction, the standard course of treatment is Benadryl and steroids. Not me. They have to find another combination. And if I have an RA flare, the common treatment is steroids, usually prednisone. Not me again.

And if I need antibiotics, I am allergic to penicillin and related drugs and other antibiotics interact with some of my other medications. Its not uncommon for a doctor to question me on the reaction I have had to a medication. Or to ask me to alter some of my other medications while on antibiotics. I have sometimes even gotten a phone call from the pharmacy telling me they can't fill my new prescription because of interactions and they need to go back to the doctor for a new one.

Also, the list of medication allergies has ramped up significantly in the last few years. I am nervous about trying new medications because I seem to develop new allergies frequently. Who knew that the anti-inflammatory gel for my arthritic hands and feet would make my heart race?

Finally, without a thyroid, I can't take most medications that have warnings about thyroid disease. Between that and being allergic to Benadryl (which translates to some kinds of antihistamines), treating the common cold is a royal PITA.

The way I see it, they went to school for a really long time and I get to make them think a lot about how they can treat me. I can be a challenge to them so they can't just give me the basics and move on.

How did that happen?

One day you were admiring how your new bathing suit or skinny jeans fit and the next thing you know, cellulite and flab are taking over. How did that happen? Maybe cancer treatment?

First you start being lazy as you go through surgeries and can't get as much exercise as you did before as your incisions heal. Next you start chemo and enjoy the side effects of steroids and chemo drugs. Then, whammo, you look different, bloated, round face, and bald.

That was me. Some where a long there I stopped looking at myself in the mirror to prevent seeing further changes. That has worked for several years.

Then yesterday other people blogged about health and self image - Nancy at Nancy's Point and Lisa at Damsel in a Dress. Nancy's blog is about exercises to bolster your self image - start by kicking everyone out of the house, locking yourself in a room, and looking at your naked body in the mirror for 30 seconds, repeat daily so you can adapt to the way you look  now and not your imagined perfect size 6. I am not ready for that step. I'll start thinking about it tomorrow. I think its something I do need to work on.

Lisa reflects on the issue of steroids causing weight gain which causes many other issues. And its not shallow or vain to stress about that. She has RA and is in her 20s and coping as best she can.

So the question becomes for me does being sick kill off my self-image?  In my case yes. I think. Or maybe I need to refine it that to say the medications killed off my self image. First steroids gave me a moon face. Then a couple of medications caused an extra ten pounds here and there. A few more surgeries too. Then the aches and pains and fatigue set in so that I don't participate in as many activities as before. So I sit around on my butt more of the time.

And somewhere along that time frame I went from a size 8 to a size 12 (or so) and I never look at myself in the mirror or in pictures. I have not yet adapted. I promise I will work on this and maybe even someday take a peek at myself in the mirror.

Just watch me!

My co-workers wonder why I go to the gym - they are not gym people - as I have so many ailments. But I tell them that I am much better off because I go three times each week, and was a regular gym person before RA and fibromyalgia. I think this is very true - my exercise habits put me in better shape physically before the onset of both of these.

Now when I have a training session with a physical therapist, we talk about my goals of keeping flexibility, balance, and range of motion. Face it, I am old enough that I need to think about these. I switched to one of the physical therapists last year from one of the trainers (there is a difference) because I wanted more direction with RA. The PT was somewhat wowed by my ailment list and the fact that I did come in and work out like a semi-normal person. He had no idea I had so many issues before then.

However the problem with my working out is sometimes my three times a week workout is compromised by my body revolting - with pain. I have a chart where I track my workouts. I put in little notes as well. Things like 'foot pain', 'back pains', or, my other favorite, 'fatigue', cover my chart by the time its full. Some days I start my workout with a pain pill.

The rule of thumb at the gym is 'if it hurts, stop doing it'. But if I followed that rule, I would never get a full work out in. But I make an effort to get there and do as much as I can.