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