More wonderful medical news

Of course, I get all the fun stuff. I have both rheumatoid arthritis and fibromyalgia. It never ceases to amaze me that some people do not know what either are. Yes, Virginia there are disgustingly healthy people out there who do not know about yucky unhealthy stuff.

So it overjoys me to read new research about my ailments. Especially when I find research that says the really lucky people who have both RA and fibro, have many more problems with RA than people without fibro.

One article is titled: Fibromyalgia Symptoms May Mimic High Disease Activity in Patients With Rheumatoid Arthritis. That title sort of says it all doesn't it? So even if I don't really have high disease activity, I will just feel like I do.

This article is from Egypt and is titled: The Impact of fibromyalgia on disease assessment in rheumatoid arthritis. I has some lovely charts and tables that compile the list of issues.

Table 2. Somatic manifestations of studied rheumatoid arthritis patients.

Somatic manifestations percentage (%)	Patients		P value
	RAF (25)	RA (25)
Widespread pain	100	28	less than 0.001
Sleep disturbance	68	32	0.011
Fatigue	92	52	0.002
Morning stiffness	56	36	0.156
Headache	56	24	0.021
Depression	88	40	less than 0.001
Anxiety	72	40	less than 0.001
Parasthesia	76	32	0.002
Cognitive symptoms	56	16	0.003
Dysmenorrhea	20	20	1
Irritable bowel syndrome	16	4	0.157

RAF: rheumatoid arthritis with concomitant fibromyalgia, RA: rheumatoid arthritis.

When I was diagnosed with both RA and fibro, my doctor told me I probably would not be able to tell which ailment caused which pain. Sometimes I can but sometimes I can't. And sometimes I just don't care.

But now that I know fibro makes my RA feel worse, I'm not going to suck it up. I think I should switch to chronic whininess. I think chronic whininess outweighs chronic pain. Some research news inspires whininess.

Do you know whats in your medical records?

Do you ever look at your medical record? The hospital I go to just switched to a new system with an electronic patient portal. I can now go in and check it regularly. Since its been active for less than six months, its needs some more data but I can still see a lot of information including visit notes from doctors, test results, etc.

In recent years, I would go get printed out copies of test results anytime I wanted. At one point I became obsessed with my blood counts and created a spreadsheet of them and then found all my previous blood tests and now have records going back to 1998. And no, my red blood counts have not recovered since chemo and have remained low.

The other day the Wall Street Journal ran an article about taking charge of your medical records. And it astounds me how few people actually look at their medical records regularly.

This is important people! Medical errors can be fatal. I know I am allergic to benadryl and prednisone so if I have any kind of reaction, I need to make it clear they cannot treatment with either - and both are commonly used to treat reactions. Never mind the fact that I am also allergic to the '-cillins';  penicillin, amoxicillin, etc.

Knowledge is power. If your doctors are not able to electronically access your records, you need to make sure you keep them up to date with all your information including prescriptions, test results, procedures, and other doctor appointments.

A big step back in the flabbiness fight

Unfortunately I had a big step back in the flabbiness fight. I really did some damage to my knee (and forgot to blog about it) when I was only trying to water the plants in the back yard and fell when (or because) my knee bent sideways. I didn't break anything but I am now the (not so) proud owner of a lovely knee brace to prevent further sideways movement.

The knee doctor gave me the lovely brace and sent me for PT and said come back in two months and we will see what's going on then. On the good side, I can do my PT at the gym for dilapidated people where I go and not have to bombard my schedule with three times a week appointments for PT. I can go once and get my exercises and then do them when I want, there or at home.. On the bad side, if I don't wear my brace, my knee keeps giving out and I have to wait until I could get an appointment with a physical therapist at the gym.

I will go for my first PT appointment shortly and hope to be able to get back to some exercising. I haven't been exercising and am very concerned about the flabbiness fight. I can't just go for a walk these days. I haven't dared to go to the gym until I saw the knee doctor. And now after speaking with the gym about my knee, their advice was to wait until I see their physical therapist and set up knee exercises before trying too much.

So I am sitting around on my ass too often. I am also closely watching my food consumption to prevent further flabbification. And my knee gives out way too often if I am not wearing the (stupid) knee brace (will I get tan lines from it?) so that I got a second smaller knee brace to wear in bed.

Okay its not cancer, but its a royal pain in the ass. Do I get some sympathy? I can just start whining?

Forcing business accountability

There is a new bill in Massachusetts which would require pharmaceutical manufacturers to disclose their costs in order to justify high prices on new medications. Hmmmm.... Do you think it would fly? I hope it would.

"An alliance of lawmakers, consumers, and health insurers is pushing for a law that would force biotechnology and pharmaceutical companies to justify their prices by disclosing how much they spend on research, production, and marketing. It also would allow the state’s Health Policy Commission to limit the prices of especially costly drugs, something not done anywhere in the country...."

"The bill cites “substantial public interest” in what goes into the prices of such medicines. Drug makers would be required to disclose, among other things, their development and marketing outlays, how much research was paid for with public funds, their manufacturing costs, and the prices of their drugs in other countries. It would also empower the commission, which is charged with holding down health care costs, to impose cost controls on some high-priced drugs."

Of course the pharma companies are not too happy about this. They claim it would reduce innovation. Okay, I get it. They don't want anyone snooping into their finances. But as far as I am concerned, if they get public funding, they need to be open about their pricing and use of the money.

If they choose not to get public funding, which they all do, then as far as I am concerned, there would need to be a bit more justification for the prices.

For decades, pharma manufacturers have been able to set their prices and the US has not negotiated with them, leaving Americans pinched by high prices. In recent years, new medications have cost tens or hundreds of thousands each year per patient for rare cancers or other ailments.

Someone has to create an onus for the manufacturers to justify their prices instead of just allowing them to ask for what they want. They try to justify it by saying their costs are high and hardly anyone pays the full prices because of insurance coverage or discounts from the manufacturers. That just isn't enough. They need to provide some kind of back up for their requests.

Okay, that's just my 2 cents, as usual.

Further addition to the cancer hall of shame

These stories just irk the crap out of me - people faking cancer to get money or sympathy. The latest is a now-former beauty queen from Pennsylvania who told everyone she had CLL (chronic lymphocytic leukemia) in 2013. But the police didn't buy it. She couldn't remember her doctor's name. Nor did she lose her hair. Now she spent the night in jail and is facing felony charges.

Nothing less than what she deserved as far as I am concerned. Fines and more jail would help as well.

I really do not understand this. People who fake diseases for sympathy? They remind me of the fakers who stand at traffic lights with poorly written signs claiming they are vets with disabilities or homeless (even though they look  nicely showered and clean), etc, begging for handouts, then ending their days in a brand new car driving home to their fancy house. There are people who do this and really are poor or disabled but their credibility has been destroyed by the fakers.

How unfortunate that some people play on the trust of others to use them. Wait that sounds like politics. Or big business. Did I say that?

Please stop changing your mind!

The news: saturated fats not bad, trans fats very bad. Now they tell us. Thank you.

Does this mean all old research will eventually be turned upside down and we can eat ice cream and chocolate every day? I find this very irritating. Its just not fair to all of us who make dietary choices now and then find out later they were wrong and we could have ignored the advice.

Actually what really annoys me is that this also happens with medical advice and it turns out whatever procedure you had was completely unnecessary.

But it is the price we pay for progress sometimes. Even though it is irritating.

A difficult decision

We left last Saturday on a two week family vacation. We returned this morning. Why? Because I am done putting up with my sister's crap. She has made much of my life miserable. How? Let me count the ways.

In junior high or high school, back when I was experimenting with make up, one day I got to the bus stop with her and evidently had a bit of eye shadow on my nose. Did she say something to me? No, instead she got everyone else at the bus stop to make fun of me and then after school complained to my mother that I embarrassed her in public. Yes this was a long time ago but this is an example of the kind of thing I grew up with.

I asked her once to give me to give a ride to an appointment that I could not miss. I also had surgical drains in and couldn't drive. Could she get me there on time? No. And when I called her constantly to find out when she would be there to pick me up, thinking I might need to drive myself when I shouldn't, she didn't pick up my call because she was yakking with a friend and just kept ignoring my calls. I have never asked her to drive me to a single medical appointment since. I will take a cab or a bus before asking her again.

When she was my maid of honor (because she is my sister I asked her), she called me about three weeks before the wedding asking wasn't she supposed to help me with invitations or anything. I hadn't asked her to do that because I couldn't depend on her to help.

She is chronically late for everything. Nothing like showing up for Thanksgiving dinner two hours late with no good reason. And not answering the phone when I call her to ask when she will be there. Or telling me she is on the way, when she hasn't left. She does all those things to me regularly, when I bother to have contact with her now. She doesn't reply to emails, texts, and voice mails and then whines when she didn't know about something. I think she does this to a lot of people sometimes but to me all the time.

Last weekend the first night of our vacation, the five of us went out to dinner - me, my husband, my sister, and my parents. My husband and I went first got a table because they didn't take reservations and we didn't want my parents to have to stand around waiting for a table. I called my sister to see where she and my parents were. The first time I called she ignored my questions and wouldn't give me an answer. The second time she just read the names of the signs that they were going by (why that was supposed to be helpful I have no idea). The third call she again ignored my questions and wouldn't tell me where they were. I hung up.

Yesterday became the last straw because I just cant take it any more. We were on a family vacation and each of the three of us, my brother included, were paying for food and taking turns cooking each night. She had to go back to work for a couple of days and came back Wednesday night. Last night I asked her if she was going to cook dinner one night and she said something along the lines of 'she wasn't sure'. Then she pouted in her room while the rest of us were eating dinner because I got mad at her for picking on my mother all the time. My brother asked her to apologize to me for the way she acted, last night and other times. She rolled her eyes and seemed appalled that she needed to apologize at all. I was done.

I would have left last night but since I had wine with dinner I was not going to drive a car. We got up and left by 5am to avoid the worst of Boston traffic. My father talked to me and asked me not to leave because its family. I hate to disappoint anyone but she doesn't treat me like family. This morning my brother got up to say good bye. My sister also got up and asked me not to leave, after the cars were packed, and I told her she should have treated me better for the last twenty years - actually I should have said for my whole life. I don't think she really thought I would leave.

It was a difficult decision but I really do not have time in my life to put up with anyone's crap. And I don't have to worry about her reading my blog because I don't think she even knows I have a blog. The only family member who actually reads my blog is my mother and I think she hasn't been reading it as frequently.

I reread this and wonder am I wrong? Am I making a big deal out of  nothing? Is it wrong to expect cordial relations with family members? Is it wrong to expect messages not to be ignored? Is it wrong to expect some sort of punctuality at get-togethers? Is it wrong to expect respect for others?

Pain update

I spent a long, quiet week filled with discomfort and pain. Sunday's sunshine made it easier to get out, but I had noted the wrong date for my lunch. I ate anyway (I was hungry! steroids....) and then ran into a friend of a friend I hadn't seen in a long while. We had a lovely catch-up.

On Monday The Amazing & Wonderful Nurse Jacque flushed my PICC line (remember my PICC line and the old port-a-cath?). A nurse at the Swedish Wound Healing Center changed the dressing over my old port site. She also taught me how to remove and insert the special stuff they use to promote internal healing. That is really one deep hole but I think it's coming along nicely.

On Tuesday The Amazing & Wonderful Nurse Jacque gave me a shot of Neulasta. Dr G increased my fentanyl from 25 mcg to 50, then to 75, and yesterday to 100 mcg. I felt a bit woozy all day ling until I realized that not only didn't I eat breakfast, I forgot to take my morning meds, including the Cymbalta. That can really mess with you if you miss a dose. Their website says to "take the missed dose as soon as you remember. Skip the missed dose if it is almost time for your next scheduled dose. Do not take extra medicine to make up the missed dose." So I took my morning dose at 2 PM instead of 10 AM. That would surely explain my woozy feeling, on top of 100 mcg fentanyl. I did remember to take today's AM steroids in my taper-down package.

Later today I spoke to the GelClair pharmacy tech. The Amazing & Wonderful Nurse Jacque ordered it for me and the tech called to arrange delivery. They will FedEx it to my hotel in DC. Such wonderful customer service!

On Sunday, when I spoke to both Dr G and on-call oncologist Dr Z, they both seemed to think I might have thrush, so Dr Z prescribed Nystatin, an oral rinse taken four times a day (after each meal and at bedtime). The Amazing & Wonderful Nurse Jacque told me today that's not as likely given my other side effects and recommended I stop the Nystatin now. She also suggested buying some Orajel to apply on the mouth sores with a Q-tip. Rik went to the pharmacy for me and I just tried it. AMAZING! I finally have some relief from pain in my mouth. I don't know how long it will last but this is such an improvement over five minutes ago....

Why am I calling The Amazing & Wonderful Nurse Jacque so AMAZING and WONDERFUL? Because she gave me her direct line, so I could call her if I really needed her. When I didn't understand why I was both hungry and nauseous an hour ago, I called her. She re-affirmed that the steroids made me very hungry. I wasn't eating a lot anyway, because of the painful mouth sores. And that hunger can indeed cause nausea. Then I carefully held the phone away from my head and vomited a small mess of everything I'd eaten during the past hour straight into the sink: ice cream and a cheese stick. The Amazing & Wonderful Nurse Jacque first asked me if I felt better (I did) and then told me not to eat ice cream. Dairy can contribute to nausea. Who knew?

So Jacque is now officially The Amazing & Wonderful Nurse. I tell her this all the time, Now it's official.

Sore skin

After the third of three doses of Abraxane (one cycle) on Monday, the port removal site hurt very seriously and so did my throat. Maybe a six on my personal one to ten scale?

Enough so that I hardly slept that night, even after taking three hydrocodone tabs. I thought maybe Rik had shared a cold with me since my throat felt scratchy. On Tuesday I waited for my afternoon appointments to get Neulasta and to see the wound care nurse. By then it still hurt a lot and with the nurse poking around it hurt even more. I took more hydrocodone after she finished, she called Dr G, and I went to see him.

Dr G ordered an xray to be sure the PICC line was still good, which evidently it is. He decided that all the sore skin, even in my throat, was due to Abraxane. It might be that I've finally had my personal maximum of taxanes. However, he was very excited about news from the American Society of Clinical Oncologists' conference and has a clinical trial in mind for me regarding microsatellite instability and doing a different genetic testing of my cancer. (There will be an article in the New England Journal of Medicine on this but he read an early online version on Monday. ASCO is amazing, Dr G is amazing, and I have no idea how he remembers it all. He didn't even know he would see me on Tuesday!) We also briefly discussed androgen receptor testing.

We've talked about Keytruda and Opdivo, the new drugs given to melanoma and colorectal patients with amazing success. They're related to treating microsatellite instability. It's a whole new world of medicine out there again!

In the meantime I put on a fentanyl patch for the pain, swished some GelClair and tried to gargle to reach the pain in the back of my throat. I didn't ask permission but did 'fess up to The Amazing & Wonderful Nurse Jacque. She can confer with Dr G and tell me to back off but it did hurt SO MUCH and now I feel better.

As Dr G has said from the beginning of our relationship, if I can hold on long enough there will always be something new coming down the road. Luckily for me, my indolent (i.e. lazy, slow-growing) cancer has given me almost thirteen years of life with metastatic disease.

Life with the new cats

Last April our 20 year old, much loved cat died, basically of old age. We were very sad and got new cats in late May, who have been settling in nicely, and us with them.

Boots is the very nice, if somewhat skittish, cat who needs a lot of attention. He is gray and white with 'boots'. He has warmed up to me, and after being gone for a week he really wants to snuggle. And have his ears scratched.

The other cat has had a variety of names. He came to us called Penguin, as he looked all black with a bit of white on his chest. But he had very thin fur and the white was his skin showing through. We started calling him Peanut because he was so small. And his fur grew in and he is really a black and dark brown tabby. Then my husband said he looked like a cat from his childhood which his mother had named Zdpot (which is what you take for the 'ackers'). He is a lot less cuddly and has a tendency to bite.

Our cat/house sitter didn't put up with his crap and smacks his nose when he tries to bite her. She also calls him TD for 'The Devil'.

Yes that is clean laundry he is sitting on. Can you see it in his eyes? He as a tendency to leave us little gifts and came with ear mites which he shared with Boots. Both came out of foster situations, but they show signs they will be friends, or frenemies, as cat are. They chase each other around an then smack each other and the sleep in a pile of paws and tails.

And they are a nice welcoming committee when we come through the door. What I need often.