BEP- Round 3

Round 3 of my chemo went as expected. My platelets where high so they had to do a TSP before they could get a good return on my port. TSP is apparently what they give stoke patients. But after administration things went well.

The hardest thing about Round 3 was the emotional impact. I am almost 3 1/2 hours from home and bored to tears. My mom was there for a couple of days but then I sent her home because of the hotel expense. There was a big oil convention in town so the prices went from $79 to $200 a night. Fortunately, the hotel I stay at, while not the most fancy, has a medical discount code so I was able to still get the $79 price. Not all hotels offer this discount, so a lot of patients are stuck paying the higher cost or forego their treatment. Anyway, even at $79 it is a $474 expense every three weeks. Not including my 20% in medical cost, food, gas and other incidentals.

After getting home the weather turned stormy and I noticed my breathing was a little more labored and I developed a constant cough. Of course, my sinus allergies were acting up a little. And, the high the humidity, the more present the cough. This continued for the first week. The second week home the cough was still there but not as much. It seemed to present itself when I exerted myself. So, when I went in for my clearance for a 4th round, we postponed treatment to be on the safe side to ensure it wasn’t more than allergies.

On a good note my Inhibin A and B counts went down. No way near normal, but down none the less. However, the question comes after the 4th treatment. They can only give me 4 treatments of BEP otherwise the potential of the side effects go up significantly. That’s a scary thought considering one of them is a secondary cancer of Leukemia. But, then the question is which direction to go in next. And, at what cost.


Round 2: My BEP Experience

I would like to preface this post with a note that this is my experience with BEP so other women with GCT have another resource other than those of the men, which is more common, that have been treated with this regimen. So, I am trying to be truthful about all my side effects, which includes constipation, so if that word bothers you, please do not read this post or skip that paragraph, unless you are about to undergo this treatment. 

After re-reading my last post about Bleomycin, Etoposide and Cisplatin (BEP), I realized I spoke about the nausea and hair loss, but did not touch on some of the other effects that were present. I guess I was more focused on my hair and how people would react when they saw me, so I thought I would be a little more detailed about the nausea and talk about the acid reflux, ringing in the ears, constipation and sleeplessness.

I started my second round of chemo April 16th and finished April 20th. The nausea I spoke of in the first post was still present.  The Cisplatin causes nausea so they gave me Zofran as a preventative. However, I still tended to have some breakthrough nausea which they treated with Compazine.  Another trigger for my nausea was some breathing treatments. They were giving me breathing treatments twice a day due to the Bleomycin. Bleo can affect your lung function. During the first round I tolerated the treatment fine until the very last day, so we skipped the last treatment. However during the second round I noticed after each treatment I began to dry heave. Since Bleo is only administered the first three days and I was not having any shortness of breath they let me skip final two days.

During both rounds of BEP the acid reflux stayed with me non stop. They did treat me with an acid reducer twice I day, which helped but did not resolve the problem.  I found myself snacking on saltines and ginger ale daily to try to combat the feelings. If I was hungrier,  I ate toast with peanut butter. It’s my go to snack at home when I don’t feel well. I like the toast because I figured the bread would help absorb some of the acid and the peanut butter gave me some protein. If I felt like I could eat more of a meal, I tried to order something bland from the kitchen. I am fortunate, MD Anderson brings you a menu and you get to order what you want to eat when you are ready to eat.  Some hospitals feed everyone the same thing at the same time. If you are not ready eat when they bring it to you, you are out of luck. Unless your family sneaks something in for you.

Another side effect of BEP is ringing in the ears. I didn’t mention it the first time because it only happened a couple of times the first two days after round one and then went away. However, after round two the ringing seemed to be louder and occurred more often and longer. It lasted throughout the first week but then seemed to taper off. The second week I was home noticed a couple of times but not as intense as the first week. I called my doctor and she scheduled an audiology appoint to see where I was at hearing wise.

The other issue I experienced was constipation. During the first round I was constipated. Half way through the week they began administering a docusate twice a day and I was able to relieve myself before my release. I went from one extreme to the next but all resolved itself within 24 hours.  During round two they prescribed the docusate from day one, twice a day. I found myself struggling on the last day of my hospitalization without much success. The problem continued at home and made it a difficult to pass anything. I continued to take Colace at home, and was finally able to relieve myself but not without difficulty. I spoke with my doctor about it and found out that Zofran could be the problem, so they are switching me to Senakot during round 3.

The only new side effect that I experienced was sleeplessness. Typically, even after sleeping through the night, I have to take an afternoon nap for approximately two to three hours. Sometimes I sleep a little longer depending what I did that day. However, this was different. I could not sleep through the night or the following day. I wouldn’t classify it as insomnia because I was able to nap for short periods of a half hour to an hour, but then I would wake up. This sleep pattern made me feel more tired than usual. That is when I learned I was being administered a steroid as a pre-medicine and that it could be the source of my sleeplessness. Finally, my body was so exhausted I did manage to sleep longer than an hour, I actually slept three to four hours. However, the next night I found myself restless again. The doctors wrote a p.r.n., which means as needed,  order for Ambien and I was able to finally sleep.

Now with all that said, at my doctors appointment yesterday I found out that my Inhibin levels went down after the first round which means the tumors are shrinking. It takes a week or so to get the results back, so the results from my second round won’t be available for another week. Fingers crossed they shrank some more and the numbers are even lower. I don’t know how much because they are not going to scan me until after my 4th round is complete, but here’s hoping for good results are good.

My first round of BEP Chemo

It has been a while since I posted, but I wanted to post about my experience with my first round of the Bleomycin, Etoposide and Cisplatin chemo regime for anyone with Ovarian Cancer that may be undergoing or about to under go this treatment so that they can be more informed.

When I first started to do research on BEP, it seemed that all the comments were from men that had the treatment for testicular cancer. BEP is used for that cancer as well as rare cancers that have not responded to other treatments. After reading what I read and having the pharmacist give me the run down of all the scary possible side effects, I must say I was a little apprehensive.  My doctor on the other hand was a little more optimistic about what I would experience based on her experience with her patients.

I was admitted into the hospital on a Tuesday. Because they did not get to get started until late in the afternoon I found out that I was going to have to stay in the hospital until Sunday. Which was one day to many. I was stir crazy by Saturday. The treatment consisted of 3 days of 24 hour treatment and 2 days of periodic chemo administration.  They key to minimizing the side effects is slow administration of the drugs.

I ate well the first couple of days, but then the nausea kicked in and I lived off of toast and peanut butter. It is my go to food at home when I am sick. Because hydration is important during this treatment and I was having issues keeping things down, they gave me additional fluids. Towards the end of the week I was able to keep down a few bland foods, so I got to go home on Sunday as planned.

I spent the first week feeling like crap. Not as bad as some described but crap none the less. The second week I started to feel better and even managed to get out of house. The walls were closing in so I was ecstatic.  Then my head felt tender, my face felt hot and I felt a little nauseated again. The next morning I woke up and realized I had a clump of hair on the back of my head. Sure enough it had started to fall out. Now the waste basket is full, but I still have hair on my head. My hair is really think, so I’m not bald yet, but getting there. The only other problem I have had is feeling exhausted and occasionally have some ringing in my ears, but I can handle it.

I go back next week for Round 2. After Round 3 they will scan me to see where I stand and they decide if there will be a 4th round or not. But after that the Doctors will have to switch it up. This chemo is one of the most aggressive and is usually only given in 3 to 4 rounds.

In the mean time, if you live in my town and you see my running around bald and with a mask on, don’t feel bad or sorry for me or feel like you can’t speak to me because you don’t know what to say. I promise you I am good and  I can handle it. After all, my hair will  grow back and I have God in my corner. And, I am still chasing donkeys.

For those who don’t know my story about going to a revival and hearing the story of Saul and chasing donkeys, you can read about it here:

My Medical Maelstrom


End of the year snow fall Indianapolis, Indiana.

As snow fell outside, I said good-bye to a year that had been filled with questions about my life. Where I was, where I was going and would I see the new year.  But, there I was, still standing. And as others cheered and rang in the new year, I was left to wonder about the days to come. Only I knew of my medical maelstrom. Had I waited to long?

It all started in October of 2011. The weather was great, I played with my dog, cooked my husband an authentic Italian dinner and then headed to the Emergency Room. I spent the next several months trying to recoup from a hernia surgery that was marred by complications related to the chemo treatment I had been receiving over the past year.

The first three months of 2012 were tainted with residual effects of the previous years medical issues.  I had been offered a chemo treatment I could not afford, my cost $9,797 per treatment every three weeks just for one drug. The alternative was an aggressive chemo that would require my hospitalization, had severe side effects and could possibly cause a secondary cancer. By the end of April I was mentally exhausted and physically tired. I just wanted to run away. And I did.

I walked away from treatment. I wanted a summer of no poking, prodding and hospital trips. I knew it would be risky, but I just wanted to be able to enjoy time with my family and friends. Something I had not had an opportunity to do in the previous year-and-a-half. By the end of summer, I knew I was pushing my luck. But, summer turned into fall and the fall to winter. I just wanted to enjoy Christmas since I was not able to the previous year.  But I promised those I loved and loved me I would go back. So, I made an appointment.

I knew I was in trouble before I walked through the doors of the hospital, as my body was moved in and out of the CT Scanner  and I met with my doctor for the first time in a year. I could feel the tumors. I could see the changes in by body and my intestinal system was at odds with me. And by the end of the day, my assumptions were confirmed and I agreed to seek treatment. My choice, BEP. Short for Bleomycin, Etoposide, and Cisplatin. The aggressive treatment that requires hospitalization. I start January 28th.

I don’t know what to expect. I googled the treatment and found mixed reviews. Some said it wasn’t so bad. Others gave a laundry list of their side effects and talked about how their bodies went into shock. All of them were men with Testicular cancer. No, that is not what I have, I’m a girl. I have ovaries, or should say I used too. I have a rare form of Ovarian cancer known as Granulosa Cell Tumor. Anyway, GCT is stromal tumor and so is Testicular cancer. BEP is an aggressive treatment for sex-chord (stromal tumors) that have not responded to other treatments. While loosing my hair and possible finger nails and hearing, nausea, skin discoloration and rashes, etc are not appealing, as, long as I can stave off pulmonary problems, secondary cancers, cardiac issues and any other permanent damage from side effects, I think I’ll be ok.

I have not decided if I am going to blog during treatment yet. I guess it all depends on if I feel up to it. In a way I do feel obligated. When I was first diagnosed with this cancer in 1998, the information on the internet was few and far between. Most was related to Equine. Yes, that is right, I said horses. A little more information is available online now, since more is known about this rare type of Ovarian Cancer. However, most have not had the same experiences I have. Most developed it after menopause. Most have not had it grow back so quickly. There were things missed by doctors when I was a youth that may have indicated something was wrong. So, if I can put something out there that may help someone someday, I feel like I should. However, my hope is that one day, there will never be a need. Because frankly, cancer sucks.

One thing this article doesn’t touch on is that for people on disability under the age of 65 don’t even have the option of Medigap. People like me are not guaranteed coverage until we turn 65. And, if we do get approved you have to state what your current health is excellent, good or fair. I have over 20 tumors in me, one attached to my liver, 7 that are being measured because of their size, so I am at the fair level. What does that equate to? Approximately $12,000 a year. They won’t actually tell you the exact amount, which could be higher, until they review your case. And, the best part is that they don’t cover any Part B. So, basically it does me no good because chemo treatments are covered under Part B. Besides, who can afford $1,000 a month? It’s more than my house payment.

My Lymphoma Journey

More an article for an American readers faced with choices on medical plans than Canadian readers (where medicare largely covers these treatments). Better education is always good, and the catastrophic nature of diseases like cancer, and the associated costs of some treatments, makes this particularly important.

The problem of insurance gaps in cancer patients.

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