It is so important to have a chemo buddy. Especially when chemo is 8-5 Monday-Friday! Here is a video of my little chemo buddy. Find your buddy even if it’s a book. Your day will go by much faster and help take the focus off of what you have running through your veins. Read more
This past weekend I pushed my body YET again and double-dog-dared it to risk everything! Fear not readers! This blog will not be turning into a blog of “Look what race I did now!”. I will however, occasionally write about progress in becoming the challenger of my body rather than being the challenged. I do find it important to write about this particular race because it was a very different kind of race, pushing the limits of my most limiting side-effects. Read more
The last week of chemotherapy I didn’t feel much peripheral neuropathy pain. My fingers were slightly painful and hard to use but after taking some B6 recommended by my oncologist the pain quickly went away. A couple weeks after that, and the completion of my BEP chemotherapy, my feet and hands started to tingle and go numb. This slowly progressed to awful, sharp pain like glass shards with every step. One of the things I will be forever grateful for is the ability of my oncologist to not only help me with his specialty but also find me excellent resources to recover from treatment side effects. I suppose when you are as good as he is you know all the right people. More on him in a future post :). Read more
Hi all! Today I will be doing a commercial at the request of my neurologist. I am very excited to release an upcoming post on neuropathy because I know there are a lot of fellow neuropathy sufferers out there that can benefit from the therapy I had. It is taking me a while to get the neuropathy post written because I find it to be a very important post and I want it to be as complete and accurate as possible. I’m a very private person, or at least I was until this blog and the thought of being on camera is a little scary. However, what Dr. Carney did for my quality of life makes it well worth it. It is amazing to me that just months ago I felt like I was walking on glass and he got me to the point of being able to run a marathon. When I get a copy of the spot I will post it on the blog for you all to see. It will explain what I had done and how it helped.
One of the most common questions I get when talking to people about to embark on chemotherapy is, “How long did it take for your hair to grow back after chemotherapy?”. I had the same question when I was going through chemo. I loved my lack of hair but was looking forward to some fun, funky stages that I would not have normally tried out. I always thought it would be so helpful to have a visual guide of what to expect and I never found anything. So!!! Here it is!
It is surprising how fast your hair grows back. Within a week and a half of the completion of my BEP chemotherapy I had a ton of “sprouts”. For more on my thoughts about hair loss please read my previous post, Goodbye Hair! See You Next Year!
My hair one day before losing it!
Bald and Beautiful- My favorite accessories when I lost my hair, my bald head, my favorite Life is Good hat, and Gracie of course!
Hair Length 1 Month Post BEP Chemotherapy- I loved, loved, loved this stage!! My head was so soft and fuzzy!
Hair Length 2 Months Post BEP Chemotherapy- Starting to see where my waves stem from! A lot of swirly hair showing up this month.
Hair Length 3 Months Post BEP Chemotherapy- I had a lot of growth this month. These shots are from the beginning to the end of the month. Mid month I could spike it up a bit.
Hair Length 4 Months Post BEP Chemotherapy- This was my most favorite stage!!!
Hair Length 5 Months Post BEP Chemotherapy-
Hair Length 6 Months Post BEP Chemotherapy-
Hair Length 7 Months Post BEP Chemotherapy-
Hair Length 8 Months Post BEP Chemotherapy-
Hair Length 9 Months Post BEP Chemotherapy-
Hair Length 10 Months Post BEP Chemotherapy-
Hair Length 11 Months Post BEP Chemotherapy-
Hair Length 1 Year Post BEP Chemotherapy-
Just about a year out from losing my hair and I went to the salon to see the always wonderful Kristin today and…
Drum roll please…
I HAVE MY PRE-CANCER haircut back! Pretty close anyway. :) I actually enjoyed my lack of hair but am happy to have my old haircut back. Now back to reality! I’m headed to the neurologist to have my follow up nerve conduction study tests to see if the combined electro-chemical block therapy worked on my neuropathy. It certainly feels like it did but I’m curious what the testing will show.
As you may have read previously, I have been suffering from chronic itching and hives post chemotherapy. My previous posts, Itching Post Chemotherapy and Itching Post Chemotherapy Follow Up have been very popular in Google search so I know there are other people out there looking for answers. I am happy to report I found my solution (for the most part)!!
After my last dermatologist visit I was determined that I would not be drugged into a sleepy coma to avoid itching. Furthermore, no other prescription had worked so far and I honestly didn’t believe this tactic would work either. For good measure I tried the Atarax and Zyrtec three times a day along with Pepcid. After a couple weeks of trying to get the insanity that was my itching under control with this method I gave up on the meds and started calling around to see if a spa around town had a steam room. I thought maybe I could get some relief with steam. I never found a steam room but talked to a spa representative that said I should get a body scrub. My instant thought was I was going to itch more after that. I WAS SO WRONG! I think all this time the crazy insane itching has been my skins toxic wasteland trying to be purged. It now makes sense to me that I had several layers of dead skin due to the chemotherapy killing my healthy cells and I needed to get rid of all of it.
Here’s how I did it!
- I got rid of my soap. It was drying out my skin more and leaving a film. I opted for Gracie’s soap, Just Hatched.
- I started scrubbing my skin every day with Lavender Scrub from Ummelina Day Spa (you may have to call them, I don’t see it currently listed on their site). I scrubbed vigorously twice a day with this stuff.
- I increased my water intake from 3 to 4 liters a day in an effort to hydrate from the inside out.
It seemed so easy. Within two days of starting this scrubbing ritual my itching and hives were virtually gone. I still have a small spot on my left thigh that always itches but it is certainly better than my whole body itching and covered in hives. It may just be coincidence that my itching stopped when I started down this path but it seems so closely related that it is worth reporting. Maybe some of you will benefit from this ritual. Good luck my fellow itchers.
Good morning all! I wanted to write a quick post about my experience with Neulasta. I started Neulasta in an effort to keep my white blood cell count from dropping during BEP chemotherapy. I had quite a bit of unexpected pain with these shots that worried me at first. Hopefully this post will put your mind at ease if you are experiencing similar symptoms. As always, talk to your oncologist if you are running into side effects. This is just my account of how my oncologist and I handled it.
Description of the pain:
- Similar to the feeling I had when I had my pulmonary embolism. I would be up all night worrying I had another clot.
- Intense pain for 2-3 days after each shot.
- The pain was a throbbing, pulsating feeling up my spine into my neck.
- Bone and joint pain. I felt like my hips and knees were giving out and breaking.
After the first two shots I realized it was directly related to the Neulasta.
I talked to my oncologist who suggested pre-medicating with Advil one day before the shot was administered. I was convinced the pain was so intense, pre-medicating with Advil wouldn’t work. I was already taking Advil after the shots and the Advil did nothing for me. But that was the issue – I needed to take it beforehand. As always, my oncologist was right. Pre-medicating did the trick for me.
Back to the oncologist I go!!! Something isn’t right.
Extreme hot flashes 10-15 an hour
Joint / Bone Pain
Voice that Sounds Like a Prepubescent Teenager When Singing
Sudden Fuzzy Hairs on my Face
Vaginal Dryness (Man I hope these symptoms help someone because I totally just broadcasted that!)
Silly me! These are the classic symptoms of menopause! WAIT!!!!??WHAT???!!!!
The backstory: There wasn’t enough time between pregnancy, surgery, and the start of chemotherapy for my cycle to kick up again. My reproductive system was kind of hit three times in a very short amount of time but I didn’t ever think that I would lose my fertility. The only talk of fertility pre tumor removal and start of chemotherapy was that I would be losing an ovary and we were not going to do radiation in an effort to preserve my fertility.
There I was approximately four months post the completion of chemotherapy sitting in my oncologists office, talking to the nurse practitioner about my symptoms and she said, “You haven’t started your period yet?”. She recommended we do a blood test. The results, absolutely no trace of estrogen in my body. NOOOOOOOOOOOOOOOOOOOOOOOOOOO! I left so frazzled and upset. This to me was WAY worse than cancer.
I no longer had the say of whether or not I could bare children. I felt like I lost my youth. I felt less feminine. I suddenly realized that I may never feel like myself again. That this was the new me. I didn’t like this me. I felt like I was always angry (lack of estrogen). I felt like I looked like I was aging (lack of estrogen drying up my skin). I felt like I was ruining my marriage by uncontrollably treating my husband like a piece of dirt on occasion. I would feel the words coming out of my mouth and I honestly felt like I couldn’t stop them. He didn’t deserve this. We didn’t deserve this. I felt so out of whack in so many ways I couldn’t accurately describe it to anyone.
For a week after that appointment I balled my eyes out. You would have thought the world had ended. COULD I BE MORE OF A SPOILED BRAT OR WHAT?????!!!!! I have a beautiful child, loving husband, great family, and MY LIFE. For the love of GOD! I needed to stop crying and look at what I had, not what I lost. Just about the time I came to this realization I got a call from my oncologist to come in and see him. This wonderful, wonderful man knew I was upset and wanted to put my mind at ease. He told me that this is normal and it may be 6 months to a year or more until I regain my cycle. I felt even better with this knowledge. Later that day I called my sister and told her what the doctor said and she said “Yeah, I didn’t start mine until a year post chemotherapy.” very nonchalantly. If I could have slapped her through the phone I would have. :) That turd!! She knew how upset I was and she didn’t share that tidbit of information. Man, I gave her the what for. She’s not really a talker, I forgive her. Haha! My point is, I wish I would have been armed with this information going in. It would have saved me a lot of heartache.
A few more months passed with no signs of a period. I NEVER thought I would be wishing for a period, EVER. I decided to start acupuncture for my itching in November. A couple of sessions in I noticed I was no longer dry, my irritability was going away, and so were my hot flashes. Going in I gave them a list of things I wanted help with never thinking that acupuncture could help all of my aliments but I thought I might as well put it all out there. Why not? I couldn’t believe I was starting to feel like myself again. Holy cow I will never regret the decision to start this process.
November passed and most of December with still no signs of a period. Christmas morning, yes Christmas morning I woke up and said to my husband, “Well I guess I didn’t get my Christmas wish.”. He said, “What was that?” I said, “To get my period.” I kid you not, 10 minutes later and 7 months post the completion of chemotherapy my period started. IT WAS A CHRISTMAS MIRACLE!!!!!
Ladies, three departing messages:
If you never regain fertility, it will be okay. You have your life.
Try acupuncture to ease menopausal symptoms and kick start your system.
Keep faith. It takes a while for your body to start working again. In reality we have such a smart system. Periods drain you and you are already drained. I believe it waits to come back when your body is ready to handle it.
Nobody tells you what chemotherapy is going to be like. Will it hurt? Will you instantly feel sick? Just how tired will you get? The list goes on and on. One thing I can tell you from experience is that my first day of chemotherapy I had my first, and last, panic attack of my life – pulling into the parking lot of the chemo-center. I didn’t know what to expect and in retrospect I wish I had talked to someone who had been through chemotherapy to know it wouldn’t be so bad.
I am a naturalist. My whole life I have been dedicated to taking care of myself, eating organic, exercising, drinking plenty of water, doing everything as all-natural, as possible. I was pulling into a place feeling better than ever, after having that pesky 5 pound tumor removed, signing up to completely blast myself with toxins! What in the world am I doing?
Oh my god! Oh my god! Oh my god!
Much to my surprise that day I didn’t even know when my chemo started!! Haha! Totally, not what I expected. They always give you fluids first so I started with that and a couple hours later I asked the nurse, when will we switch to the chemo and she said, “Oh honey, we did that a while ago.” Phew! What a relief!
Chemotherapy, like many things in life, is what you make of it. Make the best of it. Don’t sit alone. Find a buddy to go with you. If you don’t have one, find a good book or movie to pass the time. I always found on days where my chemo buddies were more occupied with Grace that Ellen always made me laugh and feel good. She is so kind to others and funny. She is a great breath of fresh air. Find your person or thing. Don’t sit and dwell on your cancer and treatment. If you have Ovarian Dysgerminoma your prognosis is amazing and this is a little bump in your life long journey.
The following is a summary of how my treatment of Ovarian Dysgerminoma with BEP chemotherapy went. I hope this helps anyone out there about to embark on this journey.
Start and end date:
Start date: March 12, 2012
End date: May 29, 2012
4 rounds, each round consisting of one full week of BEP chemotherapy 8-5, Monday- Friday, with a dose of Bleomycin the following Monday and a Neulasta (white blood cell booster) shot on Tuesday.
BEP (Bleomycin, Etoposide, Cisplatin)
Possible Side Effects:
*Reading all of the possible side effects quite honestly can drive you crazy and make you wonder if your treatment is worth it. It is worth it! Every second of every treatment is worth any possible side effect. I have compiled a list of side effects I feel were most pertinent to my treatment to save you some reading anxiety. Also please note that any time you are experiencing difficulty, let your nurse know. You would be surprised at how they can counteract almost anything these days.
Risk of Infection
I believe this is the single most important side effect to watch for. Anytime you get a fever while you are being treated for cancer it is SO important to immediately be seen. I was lucky enough to have not gotten a fever during chemotherapy. Two acquaintances of our family have not been so lucky this year. Both of them died of an infection while receiving treatment for cancer. Chemotherapy often drops your white blood cell count making it very difficult for your body to fight infection. One sign you may have an infection is a fever. Fever=Hospital! GO, GO, GO!!!
Bruising and Bleeding
Be sure to be aware of bruising and bleeding during chemotherapy and alert your doctor if you are experiencing bruising and bleeding especially if you are on blood thinners.
It is very easy for your blood counts to get out of whack during chemotherapy. It is important to talk to your doctor about the proper foods to eat and vitamins to take. In my case my counts never really dropped out of the normal range. I was very lucky in this way. One big contributor was the advice of my favorite nurse, to take Bifera to keep my iron levels in the normal range. As with anything during treatment be sure to consult with your physician before taking any supplements.
Nausea and Vomiting
There have been wonderful advances in this area over the past few years. If you are experiencing nausea and vomiting let your nurses know. They will give you all kinds of wonderful goodie drugs to keep your belly feeling nice and settled. Ativan, aka Lorazepam and Zofran were my saviors and made nausea almost non-existant. Don’t be alarmed that Ativan is an anti-anxiety medication as I initially was. It is also used to help nausea. I was SO against using it because it was an anti-anxiety. So much so that I spent a lot of time next to the porcelain god at the end of my first week. SO SILLY!!! I quickly gave in. After all my first nausea incident was at the end of my first week of chemo and my birthday. Who wants to be sick on their birthday? Not this girl!
Yes, you will get tired. You will get very tired, but you don’t have to let it consume you. You can work through it and the more you work through it, the less tired you will be. The things I used to combat fatigue were exercise, FRS (Please don’t get the low calorie crap. It contains artificial sweeteners and is bad for you!), an awesome attitude, good vitamins, and healthy eating.
Yep! You are going to lose your hair. Have fun with it and don’t despair! It’s your temporary badge of fighting honor. I lost mine at the beginning of round two. For more on loosing your hair read my post Goodbye Hair! See you Next Year!.
Cisplatin and Etoposide are two of the seven most common chemotherapy agents to cause mouth sores. If you are getting BEP chemo you are lucky! You get a double whammy. I’ve heard mouth sores are pretty common and painful. Like losing your hair it’s another one of the areas of your body with rapidly dividing cells which chemo loves and is meant to attack. I was one of the lucky ones that did not get mouth sores. I am convinced I did not get them because I stayed very well hydrated, took great care of my teeth and ate a ton of fruits and veggies. This may or may not be the cause for my streak of luck with this side effect but one can hope that it was as simple as that. If you do experience mouth sores I have heard rinsing your mouth several times a day with warm water and baking soda really helps alleviate some of the pain.
Again, I was very lucky in this area and like other side effects I escaped I believe it is because I stayed very well hydrated and didn’t let the toxin levels overtake my body.
Bleomycin can cause dark streaks on your skin. I did not know this going into my treatment. The thing is, you are hit with pages and pages of possible side effects that honestly when you have a newborn, and cancer you just don’t have time to read. If I would have known about this particular side effect I would have made a conscious effort to not scratch my skin. Everywhere I scratched I have dark streaks. These may eventually fade but so far I have not seen any fading. I have read that scratching while receiving Bleomycin creates the streaks.
Etoposide can negatively impact your kidneys. It is very important to drink plenty of water while going through chemotherapy and life in general. Who wants to get out of beating cancer only to battle kidney issues?! DRINK WATER, DRINK WATER, DRINK WATER! Another important protector is to receive Mannitol to coat your kidneys. Mannitol seems to be in high demand. If at all possible be sure to always receive it. Be your own cancer advocate and beg to not skip a dose.
Changes in Hearing
I have definitely noticed a change in my hearing as of late. The change hasn’t been drastic but I notice it in large social settings. Over the next few weeks I will investigate ways to possibly avoid this and report back to hopefully help anyone about to embark on this journey. I don’t have an answer for helping it at this time.
If chemotherapy did anything to improve my physical appearance, it gave me the most awesome fingernails I have ever had. They were like wood! Nothing would break them. I miss my chemo nails :).
Numbness and Tingling in Hands and Feet (Neuropathy)
Be sure to tell your doctor if you begin to experience this side effect. This is a sign that the toxin levels are getting a little too high in your body. You don’t want neuropathy. It is painful and annoying. Vitamin E and the B vitamins are very helpful for preventing neuropathy. If you do experience neuropathy there are some ways to treat it post-completion of chemotherapy. See my post on Neuropathy.
Pain at Injection Site
My chemotherapy never hurt going in. It was like getting normal fluids. However, the area around my PICC line always felt slightly bruised but not in the least bit painful.
Etoposide can lead to a secondary cancer later in life. How ironic is that?! This was and still is a big worry of mine but that worry is subsiding. The thing is, there will always be worry once you’ve experienced cancer. The triumph is learning to worry about the controllable. For more on the triumph of learning to worry about the controllable please read my post, Controlling the Controllable. This is uncontrollable! Just be sure to be on top of your health. Always make your follow up appointments, always be aware of your body, and always live a healthy lifestyle. That is the best you can do.
Risk of Developing a Blood Clot
In my case I developed a blood clot before beginning chemotherapy. I was immediately put on blood thinners and continued them until well after the completion of chemotherapy. I did not know cancer caused blood clots and when I had my first clot spray into my lungs before actually getting my cancer diagnosis I had no idea that this could indeed be a sign my mass was cancer. For more on blood clots, including symptoms, please read my post on Pulmonary Embolisms. Your chemotherapy regimen can also cause blood clots so please once again be aware of your body. I’m not trying to be an alarmist, it is just extremely important to watch for key things when you have cancer or are waiting on a possible cancer diagnosis.
Oh fertility issues how I loath thee and wish I knew more before going into this process! This particular chemotherapy schedule can cause infertility and send you into premature menopause. Often times this premature menopause is temporary, as was the case for me. Don’t be alarmed if it is several months before your cycle starts up again. At a follow up appointment I was sent into a state of panic when my nurse practitioner was surprised I still hadn’t had my cycle. I spent the next week so unbelievably upset that I was in menopause feeling like I was suddenly in my 50′s. In retrospect, this is a small, small price to pay for having my life. Later that week I got a call from my doctor asking me to come in to discuss. For more on that discussion please read my post, Fertility Post BEP Chemotherapy.