7/22/14 - Healthline Article - Understanding How Biologics Are Used To Treat Rheumatoid Arthritis

I got a request from Healthline to post this on my blog. Typically I don't endorse articles or products unless I believe it can have some benefit.

Healthline published an overview of a Consumer Reports' evaluation of treatments and medications for Rheumatoid Arthritis.  This is highly valuable information as it provides RA patients with an understanding of how biologics are used to treat RA. 

http://www.healthline.com/health/consumer-reports-rheumatoid-arthritis 

Due to my Necrotizing Fasciitis diagnosis while on Enbrel, I am no longer a candidate for biologics. While Enbrel helped my RA considerably, I fell into the 13% of patients that developed a serious infection. If you are a candidate for any of these medications, please read this article.

Cheers,

Beppy

6/28/14 - Update....I'm Back!

It's been a long time since I've blogged. As some of you know, I suffered from a bit of depression after my radiation treatments. I always intended to blog about the good with the bad, but I wanted to get a bit of perspective before I wrote about the experience.

I think there are many reasons for the depression. When I got my BC diagnosis the first thing I thought about was my risk for infection. Because of my past experience, this is ALWAYS foremost on my mind. I didn't want to put my family and friends through the horrible nightmare we went through ten years ago. I focused all my attention on getting through treatment with minimal risk. Luckily, my doctors were on the same page. Each decision regarding treatment was mentally draining. There were so many choices to make it was overwhelming. I believe I was doing fairly well until it was time for radiation. That part of treatment was the most difficult for me. I was uncomfortable with the whole concept from the beginning, and as I did my daily treatments, that feeling just increased. For me, it was a mental marathon. I knew it was something I needed to do, but I always had that nagging voice in the back of my head that said, "run and don't look back!" I was so fortunate when it came to side effects.  My skin held up wonderfully - my doctors were amazed.  After my treatments were finished, my mental well being took a nose dive. I did a lot of research on depression after treatment, and I found it's a pretty common thing. You're so focused on getting through treatment it typically doesn't hit you till the end. Plus, with the added benefit of being thrust into menopause, it's not a great combination!

I'm doing so much better now. With the help and suggestions of some really wonderful women from an online support board, I'm slowly getting better mentally. Thank you to the great woman who helped me along the way. You all know who you are!! I will blog about some of the suggestions that helped me when I have a bit more time and concentration to put it all together.

I'm still in active treatment until September. I get Herceptin infused every three weeks. My one good vein is still holding up. I've developed a swollen node under my armpit on the cancer side, and I still have an unresolved swollen gland in the neck on that side as well. My oncologist will be taking a look at that on Tuesday when I get my infusion. I also have a call in to the BC coordinator because I've been getting swelling on the left side in my arm and hands. I can't tell if it's from my RA or if I'm developing lymphedema. My chances for lymphedema were supposed to be minimal without having the sentinal node biopsy. My RA is having a bit of a party throughout my body since chemo ended. My knees resemble the size of grapefruits. I had to reschedule my appointment with my rheumatologist and she couldn't get me in until the end of July. My hair is growing back slowly and VERY CURLY, and I've gained over 30 pounds. I now resemble a very large Jerry Seinfeld.

Robyn is moving back to Southern California in two weeks. I'm really excited about her coming back! I've posted a picture of Robyn from this past weekend. I've got a really cute video of my faux Grand Daughter's kindergarten graduation. I will post that as soon as I download it from my phone.

The Lovely Robyn

That is my update for now. I will take more hair pictures and add them to the rest when I get a chance. I also have to update my chemo side effect post. I've developed a few more side effects that I need to add to the list. To quote a very wise woman and friend, "Breast Cancer, the gift that keeps on giving!"

As always, thanks for checking on me!

Cheers,

Beppy

5/2/14 - Pink October

I ask that anyone who reads my blog, to please read this article. We need to find a cure.

http://www.healthline.com/health/breast-cancer/turn-from-awareness-to-research

4/25/14 - Medical Oncologist Follow Up

I'm slowly getting back my strength from treatment. I think everything just hit me all at once. My upper respiratory infection knocked the stuffing out of me along with my RA flare. At the same time I was trying to recover from radiation. I'm so envious of the women that can just breeze through these treatments. Let me tell you, there are many of them. Such strong woman in my view - I feel like such a wimp.

I had an appointment with my MO this past week. He said my cognitive issues are caused by chemo brain. He said it can take up to two years to get better. He also said older women sometimes don't recover fully from chemo brain. He said reading can help restore some of the problems. Unfortunately, after my bout with Necrotizing Fasciitis, the multiple pain killers I was on really messed up my concentration, and I haven't been able to read. Staying focused has really been a problem. I'm going to give it a try though and see if it helps.

My MUGA scan results turned out well. All my blood work was good except for my lymphocytes which were low. I haven't received any panicked calls, so I'm guessing they weren't too concerned. My cough is still with me, and keeping me awake at night. I am also experiencing swollen glands. He put me on an antibiotic, so I'm hoping it finally kicks the URI to the curb. He also ordered a chest x-ray. I haven't gotten the results of that yet. Of course every new symptom I experience, I think it's progression of my cancer. I guess that's normal from what I'm told.

My hair is growing, SLOWLY. I've got full coverage, but it doesn't seem to get any longer. I stopped wearing my wig, but I typically wear a baseball hat. I had it colored for the first time last week. Unfortunately it pulled a ton of red, so I look ridiculous. I should get a pretty good indication of how quickly my hair is growing. Before treatment my gray would start to show within four weeks of having it colored.

I think my depression is improving. I've decided not to put too much pressure on myself to return to my daily activities. I'm just taking it one day at a time. I haven't posted much because I feel like my attitude has been crappy. That's another reason why I haven't been too social. I guess that's normal from what I've read. I was offered anti depressants, but I feel like I should give it a little more time. I don't really want to add to my daily drug intake. It's odd that I didn't experience depression when I was recovering from NF. I had so many obstacles to overcome during that time - especially with all of the surgeries. I guess they kept me drugged up most of the time, so I didn't know the difference. My MO said depression is common due to all the chemical changes to your body - I guess that makes sense. I feel guilty about being depressed when there are so many more women facing worse obstacles with awesome attitudes.

That's about all. I have nothing fun to report because I really haven't left the house. Once I'm feeling better, I will work on all the weight I've gained from treatment. That's another reason I haven't left the house - none of my clothes fit. The only thing that fits me are sweats - I refuse to buy bigger clothes. Hope you are all doing well. Thanks for checking on me. I'm sure I will be back to my old self before you know it.

Cheers,

Beppy

4/21/14 - Update

Just a quick update. For those of you that have called or texted, I'm experiencing a bit of depression which I'm told is perfectly normal after treatment. However, it's not something I'm used to at all. Also still fighting the upper respiratory infection that I've had for three weeks. I'll be back in touch as soon as I'm back on my feet. Thanks for your understanding.  :)

As always, thanks for checking on me.

Love to All,

Beppy

4/8/14 - Radiation Completed!!

Today I completed my radiation treatment. 30/30 finally finished!! My side effects from radiation have been pretty minimal so far. The RO said I can have skin changes for up to two weeks from completion. Honestly, the upper respiratory infection is giving me more problems than the SE's from rads. I've spent the past three nights coughing my brains out. Trust me, I can't afford to lose any more of my brain. My ribs, back and hernia are soooo sore. When did I turn into a 90-year-old woman? I saw the doctor today, and he prescribed cough medicine with a kick. I took it an hour ago, and so far, I'm still coughing. It's unusual for me to develop a cough when I'm sick. Unlike my dear sister - she got the cough gene - along with Miss Melody. Tomorrow I've got a MUGA scan scheduled to check my heart. This will be my third scan.

The next step is to lose the 24 POUNDS I've gained since being diagnosed. It's weird how 10 pounds turned into 20, and 20 turned into 24. I know I was supposed to continue walking during my radiation treatments, but I just didn't feel like exercising. I really admire the women that continue working and exercising. I'm just not that ambitious. Hopefully, once my fatigue subsides, a wonderful burst of energy will take over.

I'm done with chemo, done with surgery & done with radiation. All I have left is my Herceptin infusion every three weeks. I'll be done with that in September.

Sleepy time. Thanks for checking on me!

Cheers,

Beppy

P.S. I brought dozens of donuts to my rad team today. I felt bad for being so grouchy the day I walked out. They were all such wonderful people - even when I wasn't very patient. I think they forgave me :)

4/2/14 - Radiation 26/30 Completed

Today I finished 26 out of 30 treatments. I was supposed to get 31 treatments - there's a story behind the change. More on that later.

I had my boost CT scan scheduled for Friday, March 21st. They fit my regular treatment in before the scan. The technicians got me all set up in the CT machine, tapped a bunch of wire around my wound bed, wrote all over me, put me into position and then.....NOTHING. They came back into the room and told me they had to reschedule. Apparently the doctor wanted to be present for the CT scan. They rescheduled for Tuesday, March 25th. My skin got pretty sore over the weekend from all the tape they had used. I applied a ton of the Aloe Vera Gel and that seemed to help. After my treatment on the 25th they did my boost CT scan. The doctor decided to administer the boost in the same position as my regular treatment.

My MO granted my request to take a Herceptin break which means I will skip my April 8th treatment. My veins really need the rest. My next infusion will be April 29th. He also requested another MUGA scan before my next infusion.

Robyn flew home on Thursday, March 27th to celebrate my birthday. It was so nice having her home. Friday night Robyn took us out to dinner, and Saturday night BudBud took us out to dinner. My great niece Melody, surprised me with a homemade birthday cake -- and Jeanne, Jason, Melody & Morgan all came over to visit. My house looked like a florist shop from the flowers I received. I had a wonderful birthday weekend with my family. Robyn flew back to Northern California on Sunday.

On Monday, March 31st, I had my last regular radiation treatment. On Tuesday, April 1st, April Fool's Day I was supposed to start my first radiation boost. I arrived 15 minutes early as requested. My appointment time came and went, and 45 minutes later, I was still sitting there. During that time at least six people came in after me, and were called back to be treated. No one could tell me when I would be treated. So, in true VT fashion - I walked out.

I will explain the VT comment with a story about my Dad. My father worked at the Radio City Music Hall in New York City for over 30 years. Back in the years that my father worked in the city, he said the service was very good. He said when he went in to a restaurant, he would be served a cup of coffee within five minutes. When he moved to California, he found out they moved at a different pace. Because of this, he wasn't very patient when he wouldn't be offered a drink within ten minutes of arriving at a restaurant. If he wasn't served within his timeframe, he would walk out. This drove my mother crazy.

So yes, I pulled a VT. I was tired, sore and cranky - I'll admit it. The only problem is I have an hour's drive in each direction. So the only person I hurt was myself. But, it sure felt good. When I got home, I wrote an email to my doctor. I also asked if he could treat me effectively in five boosts instead of six. To my surprise, he said five boosts would work out just fine. When I arrived today for my first boost, I was called back within five minutes of my arrival. I guess it pays to be %itchy. They probably got even with me by zapping my heart. I guess it would serve me right for complaining.

My skin is doing very well with radiation. In fact, my radiology oncologist was surprised at how well my skin looks. He thinks the RA medications may be helping with the skin side effects. He believes the extreme fatigue I am experiencing is a combination of an RA flare and radiation. While on chemo, my RA went into remission. In the past few weeks, I've developed a bad flare in my hands, wrists and neck. Between the RA, the radiation side effects, and the lingering effects from chemo, I'm kind of getting my butt kicked. I'm also experiencing some odd symptoms. I'm having a difficult time with comprehension. I typically have to read things three times to absorb it all. I've also been misplacing things. My hat, my post office key, my cell phone ear piece and various other things. I'm also having difficulty staying on task or multitasking. My RO said it's not radiation related. He thinks it may be hormone related due to the fact that the chemo put me into menopause. He also said to talk to my medical oncologist about it possibly being what they call chemo brain. I thought I was fortunate not to experience that type of side effect from chemo, but I guess I will wait to hear my MO's opinion. To top it all off, I've developed an upper respiratory infection. I'm not sure where I picked that up being a compulsive hand washer.

This evening Budbud and I celebrated our 14th wedding anniversary. One of the best decisions of my life was to marry that man.

Melody and Morgan started soccer season. Morgan looked absolutely adorable with her braided pig tails. She's such a natural performer in everything she does. Did I mention she's the prettiest girl on her team? Then there is dear, sweet Melody. She's the only girl I know that feels bad about winning when she plays against a friend on the other team. She's one of the kindest teenagers you will ever meet. Also the prettiest girl on her team. I will try and get some action shots during the next game.

Miss Morgan

Miss Melody

Countdown: 4 more boosts to go!!

That's all for now. Thanks for checking on me.

Cheers,

Beppy