7/29/14 - ER Visit

Over the weekend we went to my daughter's to visit. During the visit my lower back on my right side started to really hurt. I've been complaining of overall pain to my MO, which is one of the reasons he stopped my Herceptin infusions. On the drive back from Robyn's, my pain got progressively worse. When Sunday rolled around nothing was improving. By Monday morning, I was in agonizing pain. It's not too often that I will describe my pain as a 10, but Monday morning, I couldn't move. It took me hours to get out of bed. At the same time, I was trying really hard not to go to "Crazy Town", thinking it was a progression of my cancer. I visited that town far too often during my NF diagnosis. I'm trying so hard not to repeat the past. Once you're diagnosed with cancer though, any real pain you feel automatically goes to that thought.

When Bud called me, I was in tears it hurt so badly. He encouraged me to call my MO. I left a message and got a pretty quick callback. The MO was concerned that it may be a spinal compression and instructed me to go to the ER or Urgent Care. We decided to go to the ER even though it was almost an hour drive. We figured they were better equipped to handle anything that popped up.

Me in the ER - Such an attractive picture - 40 lbs. later.

As soon as I arrived they got me back to a room quickly. They weren't able to get in my chemo vein (I had a feeling that would happen), so they started an I.V. where they typically take blood tests. My first drug was Dilaudid. I've never had that before, but boy did it make a huge difference. I went from a 10 on the pain scale down to a 5 in no time at all. They also gave me a fast acting anti inflammatory in the I.V. - I forgot to ask what that was. Once medicated, they took me to have an X-ray. My ER doctor was wonderful. She told me they didn't see anything to indicate that it was a spread of my cancer. It was her opinion that I have Sacroiliitis which is an inflammation of one or both of your sacroiliac joints - the places where your lower spine and pelvis connect. She believes it's caused by my RA. I've had hip pain due to RA before, but never to this degree. Only a cancer patient would be thrilled by the prospect of an RA spread. My MO ordered a follow-up bone scan just to be on the safe side which I will probably do this week. Once I got my diagnosis, they gave me an injection of Depo Medrol in my butt. I was in the ER for about four hours. When I left my pain level was down to a 3, and boy was I feeling loopy. The ER doctor prescribed Percocet, but so far I haven't had to use any pain medication. I'm very leery about pain medication because I was addicted to the Oxy they had me on when I had my NF, so I try to avoid pain medications as much as possible.

I am feeling so much better - I'm able to sit up again!! The shot I received is even making my knee swelling go down too. Therefore, I’ve rescheduled my appointment with my RA doctor. I’m all for anything that can delay or cancel my knee’s being drained. It’s amazing how sitting up can make a person feel so good! Today is a much better day!! Still have to deal with the swollen glands in my neck, but I'm hopeful it will have something to do with my RA, or a general side effect from chemo. That appointment is scheduled for next Tuesday.

Thanks for checking on me!

Beppy

7/23/14 - Herceptin Infusions Stopped Early Due To Side Effects

On July 14^th I had an appointment with my surgeon. I was experiencing pain and inflammation under my left arm (cancer side), and also felt a small lump. Basically I’ve been feeling worse with each week that passes while on Herceptin. The inflammation throughout my body has been out of control. My knees are really swollen, as well as various parts of my body. After two rounds of antibiotics, I also had unresolved swollen glands. She examined me and then ordered an ultrasound and MUGA scan. She was worried that my severe weight gain may indicate heart problems caused by Herceptin.

Thursday, July 16^th I had both tests. During my MUGA scan the technician had a difficult time finding a good vein. She was able to do the first shot (caused a ton of bleeding), but was unable to get in the second time. Therefore, she had to use my one good vein which we use for infusions. When giving the injection, a big bubble formed inside my vein. I was hoping she didn’t blow out my last remaining infusion vein. My surgeon informed me via email that my ultrasound test was negative. That was really great news, but still left me with unanswered questions. Why all the inflammation and pain? Is it my RA? Beginning signs of lymphedema?

Yesterday I had a visit scheduled with my Medical Oncologist before my infusion. We discussed my side effects while on Herceptin and how bad I’ve been feeling these past couple of weeks. We also discussed the results of my MUGA scan as well and my ultrasound results. My ejection fraction went from a 66 to a 61. Originally I thought it was 65 at my last scan – guess I had that number wrong. While that is still within normal range, he said it was a considerable drop from my last MUGA scan. He also said that Herceptin could be contributing to my weight gain and well as my inflammation. The truth is I have had quite an appetite, but not enough to justify the 40 pounds I’ve gained. YES, you read that right……40 POUNDS. He thought it was time to go off of the Herceptin. Because I only have three more to go, he thought the side effects were beginning to outweigh the benefit of the remaining treatments. I’m a bit nervous about stopping early, but originally my second opinion doctor only wanted me on Herceptin for six months. It remains to be seen if going off the Herceptin will help with the problems I’ve been experiencing.

My MO referred me to an ENT specialist for the swollen glands. He doesn’t think the cancer has spread, but he wants to make sure. He said the ENT would most likely biopsy the glands. I have an appointment with my Rheumatologist next week to drain my knees. I’m sure she will want to give me a depo medrol injection too. I’m allowed to get two of those a year as needed.

So, my treatment for breast cancer is officially OVER. I think that may take a little while to sink in. It’s weird to be finished with treatment so abruptly, but I must say, I’m thrilled at the prospect of not being poked every three weeks. Fortunately, I never had to find out if my vein was messed up. I’ll keep you all posted once I have my ENT and Rheumatologist visit. Thank you for your continued support. It’s really made a tremendous difference through this whole process.

Thanks for checking on me!

Beppy

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