What RA does

As I approach my one year anniversary of being diagnosed with rheumatoid arthritis and fibromyalgia (because I didn't have enough ailments prior to then), I can reflect back. Although my mother has had RA for more than 20 years and I thought I was fairly educated on the subject, its different when you are the one living with the disease.

To be fair, I will say I had long since moved out of my parent's house when my mother was diagnosed so I was exposed to less of the day to day issues. For many of those years, I was busy with a career which involved lots of travel and pressures. But now that it is affecting me, I find I have learned a lot more.

I do not know what the standard protocols were for treating RA when she was diagnosed in 1989, but now the protocol is to treat it strongly and quickly to prevent many of the side effects and degeneration that accompanies the disease.

I was promptly put on prednisone for the short term, as a quick acting treatment, and plaquenile, as a long term treatment, and found out I was allergic to both. Then I was switched to methotrexate oral, dose upped, and finally switched to injections in the spring. That was until my compromised immune system caused my husband's mild cold to give me a double ear infection and put me out of circulation for two weeks while I recovered. I had to go off methotrexate to treat my ear infections with antibiotics.

Finally, I have been back on weekly injections for about six weeks and am starting to feel normal, or as normal as I ever will be, again.

Over the year, I have learned all sorts of fun things about RA and how it affects the body:

• This is how RA affects the rest of your body
• It can also cause hoarseness and other laryngeal symptoms.
• RA can have a significant impact on work and relationships.
• Its not just the disease but the treatments that can cause problems with your skin - ones I have include Raynaud's syndrome, bruising, red dots, and increase sun sensitivity.
• My favorite is how RA affects both your hands and feet.

And the treatment for fibromyalgia? Its just treating the pain so we are trying to manage that. But now I have both fibro fog and chemobrain so I can claim brainlessness regularly. I have problems remembering words and names these days and am constantly misnaming things and people.

What do I have to look forward to with RA and fibro? I have blood tests every eight weeks to monitor my blood levels, particularly liver function as methotrexate is hard on your liver. I bruise very easily and every cut, scrape, or bruise takes forever to heal.

In the meantime, as life gives me lemons I keep on working on that lemonade.

Long term risks of cancer treatment

A recent study revealed that most of the survivors of childhood cancers, end up with life long health problems. I find this a bit scary. It shows that cancer treatment can cause long term health issues. Yes what was standard treatment up to 48 years ago, the length of time from the longest survivor's treatment, certainly is not standard today.

Cancer treatment has been likened to a slash and burn. Cut out what can be found and then burn it with radiation and then go after it systemically with chemotherapy. It must leave long term issues as it is such a harsh system of treatment.

But how are we going to be in 40 years? Will our cancer treatments impact our potential longevity? But what about those of us who have had cancer treatments? Because we survived treatment are we then putting our future health at risk? What didn't kill us, may not have made us stronger but the treatment may kill us in the end.

Perhaps more research is needed.

A taste of my new life

Yesterday I had a fairly enjoyable day. Well not perfect but pretty darn good. Wednesday night was methotrexate injection night, where I keep my eyes closed and my husband injects me. We used to do this on Wednesday mornings but have found that I feel nauseous and pretty awful for a few hours so we decided let's switch it to evenings so I won't be trying to work through it.

So much for that idea as I spent the evening nauseous and woke up at 1130 at night running to the bathroom. I didn't throw up but I felt like I would. Then I slept off and on for the rest of the night. In the morning I was a wreck so I actually called in sick and spent the morning at home. I spent most of the morning feeling nauseous so I passed the time knitting on the living room couch (supported by the cat) with periodic forays out to the garden to do a little weeding. I had a banana and toast for breakfast so as not to tempt fate. Eventually I ate a some lunch and felt better.

My afternoon ended with a dentist appointment which was immediately counterbalanced by a mani/pedicure. So to counteract the news that I need some periodontal work, I have fuschia toe nails.

But I digress. I feel rested and got plenty of sleep last night. That is a taste of my new life I can get used to.

An even playing field please.

I admit to being a little confused here. Why aren't manufacturers of generic drugs held to the same standards of the patent manufacturers and vice versa? This is a tad confusing.

There are lawsuits out there about side effects from generic drugs which are being heard in the Supreme Court.

Basically a generic is the same as the original medication. Federal law requires generic drug makers to provide identical ingredients, warnings, and labels as brand-name products.

If generics make up 80% of the drugs sold in the US, they should have the same accountability standards as the original manufacturer. And any side effects are therefore more likely to occur to the generic manufacturers.

"Drug companies have long asserted various doctrines of pre-emption, saying they are protected from most product-liability claims if they have met federal safety approval standards."

[This is a load of crap in my opinion. No one is above the law.]

"They argue that federal regulatory judgments trump state consumer safety laws, which are often tougher than Washington's standards.

But the high court had given a big victory to patients and consumer rights groups in 2009 when it ruled in favor of plaintiff who sued Wyeth -- now owned by Pfizer -- after losing an arm to gangrene from a common, brand-name anti-nausea prescription medication. She had won a $7 million judgment from a Vermont jury for her claims."

[About time.]

"Then last year, the Supreme Court ruled 5-4 that generic drug companies do not share the same level of responsibility as makers of brand-name equivalents, to update their warning labels when significant new risks emerge."

[Seriously?]

Its time to even the playing field here.

In the category of 'now they tell us'

Today's New England Journal of Medicine announces that women who are treated with radiation for breast cancer run a higher risk of ischemic heart disease. They claim that's okay because they got rid of the cancer so we shouldn't mind a little heart disease.

But I digress. The heart damage shows up five years after treatment and the risk continues for  more than twenty years.

Clearly in the category of what doesn't kill us makes us stronger.

Sleep

"Never underestimate the power of a good night's sleep."

I don't know who said that but it is true. Maybe its just a mattress commercial but I still like it.

I have never been the late night partier (well except college but who wasn't then and maybe a few other times but the statute of limitations is now well past on all my 20 something activities).

I believe, and have for decades, that 9 pm is a good time to go to bed for adults. A friend once accused me of living like a little kid by going to bed so early. My husband believes the same thing - I think mostly due to his military years and maybe because 21:00 looks much later than 9pm.

I have always been an early morning person. Even as a teenager I never slept until noon. Sleeping late would mean getting up at 8. The cat loves this because he likes a 5am breakfast. During the week we have an alarm clock with a back up cat alarm. Sleeping late and getting to work late was never a problem.

Usually I have slept pretty well with growing problems of insomnia over the years. Chemo treatment and stress are definitely insomnia problems. Back pain can make it had to get comfortable and sleep.

But now I no longer have any sleep problem - other than not getting enough. Both rheumatoid and fibromyalgia cause fatigue. In the past few months I have been able to take naps daily if I want, sleep ten hours a night. In the past few weeks I need both hands to count the number of times I have slept in past 8 am. I have also gotten more than 10 hours of sleep on many nights. Yesterday I woke up at 930 am.

Each week I find that by Friday I am exhausted from getting up to go to work three mornings. I can't get enough sleep during the week. By Friday night I need at least 12 hours.

I don't have enough time in my life to sleep so much. I'll have to give something up - like going to doctor appointments. That would give me more time for sleep. Ha. As if.

I am making this a positive thing

Although I wont take my last Femara tablet until I see my oncologist on Monday, just to be sure there are not any last minute positive studies that will show Femara forever will prevent any future return of cancer cooties, I am making this a positive thing - as much as I can.

Breast cancer treatment puts you into menopause. My breast cancer treatment started on August 1, 2007 and my hot flashes began shortly there after. Tamoxifen continued them. Femara continued them. I am not sure I remember life without hot.flashes. This is now January 5, 2013 which means its been 5 years and 5 months of hot flashes. They can be convenient on a cold winter day but not really. No never really. Hot flashes suck.

So now this cancer treatment cliff has a positive spin - no more hot flashes.

There are other side effects from Femara:

• dizziness, drowsiness, weakness, tired feeling;
  
• hot flashes, warmth in your face or chest;
  
• flushing (warmth, redness, or tingly feeling);
  
• headache;
  
• nausea, constipation;
  
• bone pain, muscle or joint pain;
  
• numbness, tingling, weakness, or stiffness in your hand or fingers;
  
• pain in your hand that spreads to your arm, wrist, forearm, or shoulder;
  
• night sweats; or
  
• weight gain.

I don't think I would miss any of them, come to think of it.

I can't say that I have had all of these but I really wouldn't miss them. I will confer with my oncologist and see how much better I might feel physically without Femara. Its the mental thing that is still getting to me.

Life after cancer

There is a term for  life after cancer. It is 'Survivorship'. I am not a fan of the word at all. I consider survivor a label and all I have ever survived is a bunch of doctor appointments. But I digress.

There is now focus on 'survivorship' studies or the lack of them. Doctors focus on treating patients but historically have been paying less attention to the patient's quality of life issues after treatment. It is not uncommon for cancer treatment to leave patients with a range of issues. This new field is also called 'patient activation' (which isn't much better than the 's-word'. It provides "education, resources, and services for issues of survivors such as sexuality, cognitive issues, fertility, neuropathy, returning back to primary care, depression and late effects such as second cancers and cardiac issues."

If you think about how harsh cancer treatment really is compounded by the emotions behind a diagnosis, it is not surprising that the patients are left with such a range issues.

It is just sad that it has taken modern medicine so long to realize that we do need help after treatment.

Its a vast conspiracy

Everything can now kill us off. Now they say the radiation for diagnosis and treatment of breast cancer can cause esophageal (I get points for spelling that right on the first try) cancer. And that's in addition to leukemia and ischemic heart disease. Gee thanks. So should I skip the breast cancer treatment to avoid all these side effects or do I go for getting rid of one ailment and hope I don't get all the other potential ones.

Tamoxifen has been known to cause endometrial cancer. Chemotherapy in general causes chemobrain and temporary or permanent neuropathy. Hormonal treatments cause weight gain. But you are supposed to stay thin to prevent increasing your risk of recurrence.

I can go on and on.

Its a vast conspiracy I tell you.

Further proof of chemo brain

A study (because we needed another study to keep all those researchers busy) shows that an EEG can detect chemo brain in women undergoing chemotherapy for breast cancer. So will people now really start to believe chemo brain, or cognitive deprivation, exists? For some reason, this reminds me of when doctors told women their cramps were imaginary.

If I think about the research and clinical trials put into development of chemotherapy and other drugs, when was chemobrain determined to be a 'non-issue'? It is a true side effect of chemotherapy for patients. If its temporary its one thing but for some women it really never goes away. So why was its impact determined not to be of importance?

So pretend if it it was not impact on your brain but on your heart or lungs which could be measured medically through tests quite easily and left the patient with a permanent impairment which interfered with their daily living and ability to hold a job. Would it be considered then to be a caution or warning when prescribing?

Chemotherapy drug doses are estimated based on patient weight and a few other factors so there is not really an exact dose to give everyone. It appears to me (and I am not a doctor) that the patient's first dose is a guess based on their weight and a few other factors, and then based on their reactions to it, they alter the dose for future rounds. Would lower doses still be effective but with fewer side effects such as chemo brain? I think we already know the answer - more research is needed.

Side effects and oncology drugs

The FDA is expecting to receive 20 new  applications for oncology drugs this year which is an increase. While 20 doesn't seem like a very big number, in some ways it is. It is nice to see progress in the treatment of cancer especially as an understanding of its molecular make up grows. Last  year the FDA approved 30 drugs, 10 for oncology.

But this is what gets me:

"Oncology drugs are unique in that the regulatory emphasis is on effectiveness rather than safety because patients are often so gravely ill."

Yep. Safety isn't as important. If the disease doesn't kill us the treatment might.

Look at Robin Roberts and her new diagnosis of MDS or pre-leukemia. She was treated with Doxorubicin (Adriamycin). According to ChemoCare.com:
"There is a slight risk of developing a blood cancer such as leukemia years after taking Doxorubicin."

I have another friend who developed leukemia after chemo for breast cancer. She had a stem cell transplant and has been okay for a few years.
It seems to be fairly standard that stage IV cancer patients have CT scans every three months or so. Most patients are told to avoid frequent CT scans due to the amount of radiation received. Cancer patients are put in the category of the 'we can stop the disease from killing you but the treatment might get you in the end'. How reassuring.

Their success is our problem

The doctor's successful treatment of us cancer people with chemotherapy and radiation is now our problem. Only now are doctors beginning to talk about the long term issues for people treated with chemotherapy. Well oncologists were more aware but other doctors not so much.

A recent study (because we needed another study) found that 6% of non cancer doctors knew about the long term side effects of chemotherapy drugs.

"While advances in cancer care have successfully kept more cancer patients alive, this new study finds there's room for improvement in their follow-up care. Primary care physicians and even cancer specialists need to be aware of the long-term effects of the drugs patients have taken to beat cancer.

Researchers at Harvard University, the National Institute of Nursing Research and the American Cancer Society surveyed nearly 1,100 primary care physicians and 1,100 oncologists or cancer specialists. They asked these doctors to identify the long-term side effects of four of the most widely used chemotherapy drugs used to treat breast and colorectal cancer, two of the most common cancers.

Overall, only 6% of primary care physicians and 65% of oncologists were aware of all the long-term side effects that the four drugs could cause.

When asked about the drug Doxorubicin, 55% of primary care physicians knew patients are at risk for cardiac dysfunction, compared to 95% of oncologists.

In the case of Cyclophosphamide, only 14% of primary care physicians knew women are likely to suffer premature menopause, compared to 71% of cancer specialists."

Doxorubicin is also know n as Adriamycin and Cyclophosphamide is known as Cytoxan. I was treated with these drugs during chemo. A friend of mine has impaired cardiac function as a result of chemo. All women are told that chemo was likely to put them into early menopause. But I do have another friend who was in her 20's when introduced. When she gets through hormonal treatment next year, they are going to start working on a baby.

I just checked on chemocare.com for details on side effects and Adriamycin is listed as having two long term side effects. It can interfere with the pumping of the heart and this can show up 7 or 8 years after treatment. And there is also a risk of developing leukemia years after treatment - I know two women who have had this.  Cyclophosphamide is only listed as possibly causing leukemia as well, nothing about premature menopause.

"... says that, in the past, medical training has not been focused on making sure physicians taking care of cancer survivors are adequately prepared to deal with long-term side effects.

In addition to chemotherapy drugs and radiation treatments affecting organs and tissues, ... also spoke about psychosocial problems patients can face, like fear of cancer recurrence. Problems with relationships also occur because patients are no longer functioning in crisis mode and reentry into a normal pattern is sometimes very difficult.

Experts agree that in the past, the emphasis has been to keep cancer patients alive, and that entire field of cancer survivorship is a pretty new one. But with the success of cancer care, more attention must be given to this area. ... points out that it's now recommended by professional societies for doctors to provide a survivorship care and treatment plan when patients complete their cancer therapy. Such a plan will inform the patient of issues they may face and they can share this information with their physician.

Not recognizing how a cancer survivor can develop treatment-related health problems is a concern. Link calls it a doctor-education problem and a patient-education problem, which he believes could be helped by better use of electronic medical records."

This means I need to educate my doctors. I do like my new primary care doctor but she is young and I will need to have a discussion with her about long term side effects. What didn't kill us may not have made us stronger in this case.

Treatment options

So what if during your breast cancer treatment you were given a choice of treatments with essentially the same expected outcome:

- lumpectomy with standard radiation for 5-6 weeks, or
- lumpectomy with seeded internal radiation for 5 days known as brachytherapy

Which would you choose? Probably the one which offers the shorter treatment span. And what if we added in the note that the shorter treatment option would leave the patient with a higher risk (30-50% higher) of needed a mastectomy or side effects such as necrosis, rib fracture, or infections.

Hmmm.... that complicates the decision a bit. Me, I cant decide which one I would select. I can see the benefits of shorter treatment time and personally found radiation a real drag in that I had to go every day for so many weeks. I see the appeal in the shorter treatment time and if given the option that it would have the same expected outcome with the higher risk of side effects I would be concerned.

Side effects can't be undone. If you have a mastectomy,  necrosis, rib fracture, or infections they can be very stressful and never go away. You can't undo a mastectomy. A fracture, necrosis, or infection will heal but may result in more scarring or other long term damage.

In brachytherapy they basically stick radiated stuff inside you which has a definite 'ick' factor as well. I don't care what the half life is, I'm not sure I want anything left inside me.

What this is telling me is that just because a new treatment option sounds good, we need to be concerned with the long term side effects as well. We complain that the FDA can take eons to approve a medication or treatment protocol but they also need the time to learn about the long term effects.