Thursday, March 31, 2005

Bleomycin Toxicity

After cycle 4, I really got sick. Fall down sick. I was getting increasingly breathless -- even when walking short distances. I had zero energy. The alarming thing for me, though, were increased fevers over several days. I never get fevers. The doctors tell you to expect your temperature to spike a bit the couple of days after treatment (a side effect of the Bleomycin), but after a Monday treatment, my temperature was still spiking on Saturday. Plus, I had a persistent, dry cough, breathlessness and heaviness in the chest.

I went to the oncologist, and it appeared that, yes, I was experiencing a toxic reaction to the Bleomycin. After a CT scan of the chest, chest X-ray, trip to the pulmanologist, trip to the respiratory clinic at the hospital and a bronchoscopy, my toxicity was confirmed.

I was forced to skip my next treatment (disheartening) in order to get things under control. We also took the Bleomycin out of my ABVD regimen and started me on high-dose steroids. The doctor says this decreases my survival rate by 1-2%. I have also heard that it increases my chances of recurrence by about the same percentages. Prednisone, however, does have anti-tumor properties. I asked my oncologist if the Prednisone could be considered an anti-tumor agent, and he said yes. I wonder if its part in the protocol does anything to those percentage numbers.

So, here come the steroids!! I was started on 100mg of Prednisone a day. Wowza. I could tell the difference immediately. To begin, I became just a bit nutty. (Bringing me to my most classic doctor moment. As the doctor left the room, she said, "Be sure to call me if you start to hallucinate.") In the few hours following a Prednisone dose, I found it difficult to hold a thought in my head. I also had trouble understanding some things I read.

The silver lining.
On the OTHER hand...the steroids gave me energy. For the first time in months, I was able to walk, do things around the house, and just be up and around. This artificial burst of energy was invaluable to my spirit and with all of the side effects of the Prednisone (I've had many.), I'm almost happy to have "had" to take them. It's helped me get through the last two cycles of chemo.

The Blues

Cycles 3 and 4 were very tough. I had little energy and increased nausea. I was not bouncing back quickly. And, it was a cold, gray winter!

I also learned much about the power of the mind. The anti-nausea drugs available to chemo patients are incredible. When I first started treatment, one nurse told me that I wouldn't throw up once during all 6 cycles. I didn't believe her. Now, however, I know this fact is totally possible.

Despite finding a great anti-nausea cocktail, I did throw up. Every other Monday in the chemo room. It was anxiety and was the weirdest thing. I swear, I was able to tell and almost control when it happened. One time, I started to feel it coming on, but waited for the nurse to remove the IV from my port so it would be easier for me to "race" to the bathroom. My vomiting was totally psychological.

I really hate chemo. I hate the way it makes my body behave and smell. I'm tired of the chemicals!

Needless to say, I think you can expect to experience some depression half-way through. As you start to feel sicker, the hill of chemotherapy seems harder and harder to climb. Let yourself feel depressed, and try to coast through it. I know from experience that as time passes, you will start to feel better and see the light at the end of the tunnel.

Scans after the 2nd Cycle

My oncologist says getting scans after the 2nd cycle is a good prognositic indicator in determining the long-term effectiveness of the chemo. He was looking for two signs when he sent me to get a PET scan in December. He looked for a significant reduction in the radiological uptake of the tumors as well as a physical reduction of the tumors as well. He was looking for a specific percentage of physical reduction, but, frankly, I can't remember what it was.

Anyway, I had great news. After two cycles of ABVD, my tumors showed zero radiological uptake -- ding, dong, the tumors were dead! Physically, they were at least 50% smaller, but they did still show up on the scans.

Tip: Ask your doctor if he/she wants you to get scans after you've completed your second cycle of treatment.

I'll be honest, though, the news was great, but I didn't feel so great. The chemo treatments were really starting to get to me. It was taking me nearly a week to recover from each treatment. I was becoming increasingly fatigued, my hair was falling out in droves, and the idea of 4 more cycles -- treatments 'til April -- blew my mind.

Wednesday, March 30, 2005

Hair Loss

My first oncologist told me to expect to lose all of my hair. So, I thought, if I'm going to lose it, I'm going to have some fun! I dyed it about 9 different colors in 2 weeks -- finally ending up with bright pink hair. I was going for my version of the Gwen Stefani look. Then, I waited for my pink hair to fall out in droves. It didn't.

I had steady hair loss throughout the chemo, but I didn't lose it all. Instead, I would say I've lost about 60-70% of my hair. Another oncologist told me that only about 75% of his ABVD patients lose their hair. He also added that young men with thick hair sometimes lose so little hair that you can't even tell they're getting chemo at all. So, prepare yourself to lose it, but know that some of it might stick around!

I did end up having to get a shorter haircut, though. My hair just started looking creepy and scraggly. I had shoulder length hair, and although it's weird to be balding, the practical concerns were that there were long hairs EVERYWHERE. The hairs that got stuck in my clothes were especially annoying. So, you may want to cut your hair short sometime during this process. And, get a screen for your shower drain. Because of that, we've only had to fight one major drain clog here.

If you do lose your hair, please know that my mom lost most of her hair with one chemo treatment and completely lost it two other times. It always grew back. It was a bit curlier, but otherwise it came back soft and beautiful. She was comfortable without her wig about 6-8 weeks after her hair started to grow back. My hair is very short with a lovely smattering of bald patches. I don't wear a wig, though, and only wear hats if my scraggly hairs are unusually unruly. My hair used to grow very very fast, a trend I hope continues when this is finished!

Chemotherapy Tips and Other Cancer Musings

I started this blog late in my treatments. So, having had about 5 cycles under my belt, I feel I've amassed some good knowledge and experience to share. Here are some of my tips and musings.

1. Vinblatine/Velban can cause extreme jaw pain and headaches. I only experienced this pain after the first treatment. Your doctor will give you whatever pain med you require.

2. ABVD is an EXTREMELY constipating chemotherapy. (The Neulasta shot also constipates!) In the beginning Senna-C, a natural laxative, worked pretty well for me. After a while, however, it wasn't as effective. I have found Colace to be a decent stool softener. Truth is, good hydration is the best medicine. During chemo weeks, I have trouble drinking lots of water, so I try to make up for it during non-chemo weeks. Glycerine suppositories can make your time in the restroom more comfortable. {Post chemo note: I never fully overcame the constipation thing. It was unbelievably painful and demoralizing. (I'd think, "Now, I can't even do THAT!") Do your best not to force too much in the bathroom as that can cause hemorroids. I had some anal fissures (little cuts) and bleeding, but that went away almost immediately after chemo was over.}

3. Put numbing cream on your port 60 minutes before chemo. Really hunk it on there. Then cover port with plastic wrap and keep it wrapped til you get to chemo.

4. I drink a lot of decaffeinated iced tea. Plain water makes me feel nauseated, and iced tea is a good hydrating substitute.

5. TREAT YOUR NAUSEA IMMEDIATELY. There are a million anti-nausea drugs. I have found Phenergan to be quite helpful. It does, however, make you sleepy.

6. I started to feel overwhelmed and depressed right around the halfway point. Once I got closer to Cycle 5, my spirits started to lift. Remember a good thing about Hodgkin's -- you probably have a finite number of chemo sessions. Keep your eyes on the prize and take it easy on yourself if you get frustrated and depressed in the middle.

7. Since I work at an elementary school where germs abound, my doctors are not letting me work during chemo. I am now on long term disability. You may want to research this option if chemo gets too tough for you. And, for those of you who are able to work during your chemotherapy -- kudos to you. You should be truly proud of that accomplishment. If you are a full-time mom and chemo patient, you are a true superstar.

8. The Neulasta shot can give you bone pain. This happens because your bone marrow is very busy making new blood cells to release into your bloodstream. As a result, your bone marrow becomes "swollen" with immature blood cells. Your "swollen" bones can feel quite sore. I've found that Tylenol effectively abates the pain.

9. Hunger can increase nausea. Make sure you have foods in your refrigerator that you can easily heat up in the microwave. We cook the weekend before each chemo treatment. The Barefoot Contessa has a wonderful recipe for chicken stew with biscuits. This meal has been a lifesaver for me on days when I am tired, nauseated and just need food. I also have enjoyed eating hearty soups.

10. This brings me to the next tip. Don't count on the "silver lining" of the chemo diet. I expected to lose those final 10 pounds of college weight, but it hasn't happened. There are weeks where I lose lots of weight and weeks where it comes on. In my 5 1/2 months of therapy, I have only lost 2 pounds.

11. Exercise when you can. In the beginning, I took long walks every day. Now that the fatigue has really gotten to me (and since I've had toxic reaction to Bleomycin), I am not able to exercise much. You can call me the human veal. I truly miss the physical activity, so pursue it as long as you can!

12. Read all on-line information (including this) with a grain of salt. I check most of the "hard core" statistics or concerns with my doctor. I find it particularly noteworthy that most "cured" HD patients do not share their experiences or stories on-line. On the other hand, it has been so interesting for me to read other people's blogs and comparing their experiences to my own.

13. Get ready to become a wild animal. I have NEVER had such sensitivity to smell. Smells I never noticed before totally get my attention now. One time, I smelled my husband's mouthwash when he was in another room. And -- sorry to be graphic and gross -- during chemo week, I find the smell of my urine to be particularly chemically-laden and offensive.

14. I'm not into the "everything happens for a reason" philosophy. This reasoning makes you wonder what you did to deserve the cancer! Just know that there is an end in sight and make sure never to take good health for granted ever again.

14. I have significant anticipatory nausea on chemo days. I get someone to take me to chemo and take Ativan, Phenergan and Emend treatment days. When it's over, I always end up taking a long, long nap. This is a good thing on a day when -- let's face it -- you're not that interested in being awake anyway.

15. Biotene is a good mouthwash to prevent mouth sores. I had hardly a one!

16. In the chair, sucking on hard candy didn't work for me, but chewing gum did.

17. Ask the nurse to push the saline slowly if the taste of the saline grosses you out. Pushing it slowly really works.

Beginning Chemotherapy

We did delay the beginning of chemotherapy in order to complete fertility treatments. The treatment was actually put off a couple of weeks longer than we had planned. My ovaries had been so hyperstimulated, we were afraid that their unusually large size would make them particularly vulnerable to chemotherapy. When we were finally given the all clear, we were actually excited to get the show on the road.

The first treatment wasn't all that bad. A chemo nurse will sit with you and explain each drug and its possible side effects.

I would say I was back on my feet a couple of days after my first chemo treatment. This "recovery time" got much longer with each successive treatment. One of the great ironies of my Hodgkin's race is that I never felt sick until I started curing my cancer.

Tuesday, March 29, 2005

Fertility Treatments

Although it is not proven that ABVD chemotherapy causes infertility, it is a risk. So, my husband and I decided to see a fertility specialist.

We decided to begin the IVF process -- by doing a "one shot" egg retrieval process. This whole process took about 12 days and involved more needles (most of them small) that I can count.

Basically, you give yourself hormone shots every day. Then, you go to the doctor every day, have your blood drawn and get a vaginal ultrasound (not as unpleasant as it sounds). It is a truly REMARKABLE process. I literally watched and felt my ovaries growing full of eggs.

Tip: It is a drag to get blood drawn every day. If you have small veins, like me, be sure to drink lots of water before you get your blood drawn. Hydration helps the phlebotomist (blood drawer) find and access good veins.

After the majority of your eggs exceed 1.8cm in diameter, you give yourself a shot to stimulate ovulation. Then, they put you to sleep (conscious sedation just like the bone marrow biopsy), and take the eggs out. We produced 47! 19 of them were fertilized and frozen successfully. My husband and I still plan to try to conceive naturally after we're given the all clear by the oncologists (hopefully in 2 years?), but are happy to have our frozen basketball team in case the ABVD killed my eggs.

We were ready to start chemotherapy. Let the poisoning begin!

Picking a Chemo and Getting a Port

Like everyone else, we debated primarily between ABVD and Stanford V.

We picked ABVD because it's history of success was solid. Stanford V also has great numbers, but the two chemotherapies have never been pitted "head to head." We had fertility concerns with ABVD and seriously considered Stanford V for this reason. Ultimately, I was turned off by the amount of Prednisone (a steroid) associated with Stanford V. (There's a little irony here you'll read about later...)

So, we picked ABVD. Because of my staging (IIIA), our doctor advised 6 cycles for a total of 12 treatments. Stage III also negated the possibility of radiation because my tumors were not localized enough. Truth is, I would've probably chosen extended chemo sessions over radiation treatments anyway. My mother really hated her daily radiation treatments when she got them. Plus, I was concerned about the relationship between radiation treatments and secondary cancers. I have heard, however, other patients write about how much easier radiation treatments are than chemotherapy.

Getting the Port
I have terrible veins and all my needle experiences during the staging process convinced me that I should get a port placed in my chest for chemotherapy. I have heard that at least 2 of the 4 drugs in the ABVD treatment are painful when injected directly into veins and can cause cramping and arm pain for several days afterwards. So,
TIP: Get a port. Getting it is a relatively easy process. More conscious sedation, you wake up, and it's in. It has really made the administering of chemo, blood draws, etc. infinitely more pleasant. And, you can get numbing cream from your doctor. Put the numbing cream on about 60 minutes prior to your treatment, and you won't feel them start your IV on chemo days!

The downside of a port for me is mostly cosmetic. It is a disk shaped solid thing that sticks out of your chest. I hate the way it looks. I was so happy to have the majority of my treatments take place during turtleneck weather. It also took me a while before I could sleep on my stomach comfortably. No doubt, as soon as I get the all clear at the end of my chemos, I am getting it removed; but I've spent many days in chemo watching the nurses trying to find good veins on patients, and I'm 1,000,000% convinced the port is the way to go.

I'm in my early 30's and newly married, so it was on to the fertility clinic (baby-making insurance) before beginning chemotherapy.


So, shocked, it was off to the races.

First we got a CT scans from the neck to the pelvis. I thought the CT scan was the most unpleasant of them all. Drinking the barium is generally creepy, but does taste better than it used to. I didn't enjoy it when they started the contrast dye. That warm feeling was gross. But, hey, it did it's job. It found one more tumor and another suspicious spot.

On to the PET scan. Believe it or not, this scan is really quite calming. They inject you with a little radioactive glucose (tumors love to eat sugar), and then sit you in the dark for an hour. I thought I would become incredibly bored and anxious, but after a few minutes, I zoned out and then the scan started. This scan discovered a third tumor in my left pelvic region -- BELOW the diaphragm. I had moved from Stage II to Stage III. To me, the staging was more depressing than the diagnosis itself.

Then, I got a bone marrow biopsy. I have read that a lot of people found this biopsy to be incredibly painful. I didn't think so at all. They did put me to sleep, though, and I think this is key.
TIP: Ask your doctor to put you to sleep. It's also called "conscious sedation." I think this makes the biopsy experiences infinitely more comfortable. Afterwards, I was a bit sore, but I wouldn't describe the soreness as painful. It was more like having a stitch in my side.

I also got an echocardiogram so my heart could get the all clear before the poison. That test is no biggie.

So, that's it. I was a girl with no symptoms whatsoever who now had Stage IIIA nodular sclerosing Hodgkin's Disease. It was time to talk to the oncologist about chemotherapy options.

The Road Begins...

I found a lump near my collarbone in August, 2004. I went to the general practitioner got a checkup, got bloodwork and a chest X-ray. My bloodwork was relatively normal except for a slightly raised white blood cell count. The chest X-ray was also negative.

I'm a school teacher, and it's perfectly reasonable that I just had a bug. So, I started on antibiotics and waited for the darn lump to shrink away! But, it didn't...

And, here's my first tip!
Tip: When the lump doesn't go away after a good round of antibiotics -- GO BACK TO THE DOCTOR. Advocate for yourself. Don't wait longer than you have to. Remember, it's always better to be safe than sorry!

I had the entire lymph node removed. You may have a choice of a needle biopsy, but I figure, why take a piece of something when you can get the whole thing OUT OUT OUT!

Yes, the pathology came back, and yes, I had a firm diagnosis -- nodular sclerosing Hodgkin's Disease. Yuck-o-rama. On to staging...

Why I started this blog

I have been all over the web looking to read about Hodgkin's Disease and about people's experience as they get treated for it. To begin, I have been surprised by the lack of sites on-line. I have found some good ones, though. When I figure it out, I will post those sites here.

Also, I want to write a positive blog. Cancer is infinitely more curable, or at least treatable, now than ever before. Plus, Hodgkin's does have an exceptional cure rate. The treatments are unbelievably harsh, and it is a tough road, but I think it is important to remember how lucky we are. I know this because...

My mom fought breast cancer for 18 years -- half of my life. It was heartbreaking and inspiring to watch her experiences, and she finally lost her battle 10 days after I got my diagnosis. I've seen breast cancer, and know that Hodgkin's is incredibly serious, but it is curable -- even when it gets to the bone marrow. (I learned this from my oncologist this very day.) Having seen my mom's experience, I do feel "lucky." I was lucky to have an exemplary role model. Her battle with breast cancer was truly arduous -- full of long chemo treatments, surgeries, radiation, etc. Hodgkin's patients are lucky to have great, proven treatments with which to fight the battle. Fight, fight, fight!

AND, we're lucky to be Americans. Lucky -- despite it's occasional frustrations (especially with health insurance) -- to have access to the best health care in the world. So, I decided to start my own blog. I've completed 5 out of 6 cycles and feel I've learned some great lessons to share with anyone who's interested. So, feel free to keep reading if you'd like!