Chemo Tips & Tricks to Help Make Treatment a Little Better

(A beloved family member is starting their chemo journey.  I am re-posting this for him and his family in the hopes they might find some useful information.)

1. For mouth pain-Buy Biotene toothpaste and mouthwash (it’s made for dry mouth sufferers). Using these items helps the mouth pain and helps keep your mouth a little moister. Walgreen’s sells it.

2. For dry skin-Chemo dries out your body quite a bit. Switch to a moisturizing soap like Aveeno. Cetaphil lotion is non-irritating, non-greasy and quick absorbing (my dermatologist recommended these).

3. Adriamycin - The Adriamycin pretty much guarantees hair loss. Mine started falling out on day 14 after my first treatment.

4. For nosebleeds-After about 5 treatments, my mucous starting getting a little bloody, especially in the morning. My Oncologist said to use a saline spray to moisten the nasal passages, but this didn’t work very well for me. I bought a case of the small kid size Gatorades and drank one a day. Problem solved.

5. Nausea - If you get nauseated during a treatment, ask the nurse to slow down the drip (Decadron). Adding 15 minutes to the drip really reduced the discomfort. They didn’t tell me this until about treatment #9.

6. For hip pain-If you’re white cells drop and you have to get Neupogen shots, they can cause a great deal of discomfort. My hips and legs hurt so bad after the shots, Vicodin wouldn’t help. I know this sounds weird, but take an anti-histamine. The pain is caused by a histamine reaction and most of your white cells are produced in your hip region. One Zyrtec later, everything was fine.

7. Numbing Cream - If you don’t have it already, ask for Lidocaine Cream. Apply to your port area 2-3 hours before chemo and cover with Saran Wrap to allow better absorption without messing up your clothes. This numbs the injection site. Also works well for celebratory tatoo when cancer free!

8. For the ladies (Especially if you're amply endowed) - Before having your port inserted, invest in a sports bra. The weight of your breast can cause the scar to widen because of the pulling during the healing process. I learned this the hard way. When I had my port removed, I explained this to the surgeon and he cut the scar tissue away so I could start with a fresh wound. He found it amusing, but said he had never thought of that (he looked about 20 years old). I explained to him that he only sees us lying down and wouldn't realize they were D cups when they spread out.:-)

9. Weight Gain - If you gain >15% of your body weight and are not having difficulty with nausea, ask your doctor to decrease your Decadron a little.

10. Nausea - One of my readers used Prilosec to help alleviate nausea during treatment.

11. Tylenol - If you aren't already given it, ask for Tylenol at the beginning of treatment.  It helps the discomfort of treatment and any headaches from chemo.

If you have any tips and tricks to share, I'd love to hear them and add them to the list. Click on the comments link below and submit them. Please let me know if you found these tips helpful.

In honor of Father's Day...

I would like to wish my amazing husband Jerry a Happy, Wonderful Father's Day on behalf of our kids, Flapjack, Cupid, Romeo and Biscuit!  Yes our kids all have fur, but their daddy goes out of his way for them all the time.

The following is an excerpt from the draft of the 'book' I'm working on that I felt was appropriate for this day even though I have not finished writing my book yet.

"My last contact with my father was in July 2004. 

Advice for Chemotherapy & Cancer Patients Wanting to have Children

This advice is mainly for women as that is the point of view I am coming from.

I completed my cycle of ABVD in Jan 2005.  Prior to adopting ABVD protocols for treating Hodgkin's Disease the standard treatment was MOPP.  While MOPP was an effective treatment, it was 100% effective in causing sterility in those patients receiving it.

With the introduction of the ABVD protocol, the chances of becoming sterile as a result from treatment went from guaranteed, to uncommon. 

Having a rough month...

Definately can't wait for the brighter days that I hope are ahead.  Jerry, Flapjack and I are all having procedures this month and I am so overwhelmed it is difficult to get out of bed. 

Flapjack was diagnosed with a Stage 4 heart murmur and has been on Enalapril for 2 weeks and double dose antibiotics for one week to prepare for his skin biopsy on a very troublesome spot on his stomach that

Cancer Questions Answered

What type of cancer did you have?

Hodgkin’s Disease (Hodgkin’s Lymphoma) – It is a cancer of the immune system. I was Stage 3b, which means that the cancer was on the right & left sides of my body and below and above the diagram, but had not yet made it to my bone marrow.
How long was your treatment?

6 months of chemo. I was fortunate to respond well to chemo and did not require radiation. My doctor did hit me with the maximum allowable doses of chemo. After chemo I had quarterly PET scans for the first 2 years, then every 6 months for the next 3. Now I just need an annual PETscan because I am more susceptible to other cancers and I will be immuno-supressed for the rest of my life.

How did you tell your family?

I had been sick for some time off and on (approx 8 years). The diagnosis came after a bout of jaundice that started when we returned from Ireland. My husband went to every appointment with me and it was getting ridiculous so I told him to go to work and I’d go to my appointment by myself. Of course this was the appt where I was finally diagnosed, so he found out by phone. From there the phone tree started. I’m a very blunt person, so there was no sugarcoating.

What qualities did you look for in your treatment doctor?

I had worked as an Administrative Manager on the Oncology floor of one of the largest hospitals in the area and at my Hematologists office years before, so I knew I wanted either Dr. Kalter or Dr. Guzley. When my family doc sent me to Guzley, it was no problem.

How did you know where to go/what to do?

I didn’t. They told me and I researched a lot. I was beginning to think I was a hypochondriac and had actually scheduled an appointment with a psychiatrist before the jaundice. The odd thing was, jaundice was not a symptom of my cancer, but when all the Hepatitis tests came back normal, they sent me for a CT Scan. By the time I got home from the CT they were already on the phone calling me back. They just happened to pick up part of a 7cm tumor in my chest on the scan.

Can they tell you how you got it, or what caused it?

The cause is unknown, but in my case they feel it is related to the time I lived in Woburn, Mass (The movie “A Civil Action” with John Travolta).

If you read my blog, you can do a keyword search of cancer or click on the cancer tag in the left side margins. Most of the Hodgkin's entries are from 2005 and earlier.

Hope that answers all your questions Jen. Let me know if you have more

5 year Chemo-versary!!

Well it's officiall! I am in remission from the Hodgkins Disease I was treated for in 2004-2005! Yay!

Jerry & I are now able to move forward with our plans to relocate. We are very excited. We have spent the past few months de-cluttering the house by sending some of grandparents effects to my siblings in Maine, selling on ebay & craigslist and giving stuff to friends.

After a while, dealing with all this stuff gets to be extremely overwhelming and tiring. We have trash pick up twice a week with the automated 96 gallon cans. These cans are so big I could climb in and be comfortable! We filled those suckers up 19 times!!

Grossly Negative...

My rost recent PET Scan has come back Grossly Negative (don't you love that in every arena other than Medicine negative is bad, but in Medicine you always want to be Negative). One thing I learned from my PET Scan is that my Ureter isn't in the right place. Instead of coming straight down, mine verves off on the left and takes a little road trip. Nothing big, just a curious side note. The only thing going on is that my Liver hasn't returned to normal like it should. My levels have come down since my Jaundice last June that led to them finding the Hodgkin's. Jaundice isn't usually associated with Hodgkin's so the 2 events really fall into the lucky coincidence category. Over the last few years, my PCP (a brilliant Dr named Denoia, who is retiring from practice to go into research unfortunately) has run so many Liver tests on me because my levels were always going up and down. So now Dr. Guzley says if they haven't gone down more on my next visit, June 30, I'll have to go see a GI Specialist. Sometimes you just want to say, Geesh!, haven't I been through enough.

Greetings!

Just a quick post to let everyone know I'm doing great! Here are some pics we took yesterday. Yes, I have some hair!

Pics of Me & Bonnie, Jerry and Courtney

Surgery is Over!!

I had my Port-a-Cath taken out today. A lot of people asked me what the port under my skin in the pictures from last July/August looked like. Well, some people may think it's a little sick, but I kept it after it was removed this morning (don't worry it's been cleaned and sterilized). It was attached to my chest wall and had a tube attached that ran into my Subclavian vein to feed into the Superior Vena Cava. I just took a picture of the top view, but it is about 1/2 inch thick.

Below is a website that explains the Port-a-Cath
http://www.breastcancer.org/tre_sys_chemo_ports.html
It really is a simple procedure. I was awake when they inserted it (kinda). I was out cold for the removal.

Happy Easter!

This has certalinly been an interesting week. Out of the blue I got an Email from one of my 2 best friends from Junior High! We ended up talking for about 2 hours on the phone. I don't think I've spent that much time on the phone with a friend since High School. This led to an Email from my other best friend from Junior High. I've bumped into Laura a couple of times around town over the last decade, but her Husband and I never got along, so we didn't really talk. Lisa I hadn't seen or talked to in 15-16 years. It was definately weird going through old memories that I hadn't thought of in years, but it was way cool (for lack of a better description).

Monday morning I have my final surgery to remove my Medi-Port and stop taking Coumadin, then I will be as back to normal as possible. Yipee!!

We're just having a ham dinner at the house with my Mother-In-Law and Grandmother today. The twins are at their Mother's until later this evening. Hope everyone has a great Easter!!

This is the week

I go for my first post-cancer follow up visit with my Hematologist on Thursday. Hopefully he'll say it is OK to have my final procedure, surgery to remove my Medi-Port, and I'll be able to go off Coumadin. It's the only med I'm still taking. If he clears me I'll be able to go to the gym and drop all the extra pounds the steroids made me gain. From the 50 I initially lost before Cancer, the steroids put 20 back on. I suppose it could have been worse, but I'm looking forward to getting at least back to where I was when I started Chemo. Of course I was still trying to lose 15 pounds when Chemo started. Figures I'd fall into the Cancer group that gains weight with their drugs instead of loosing it.

Thanks to everyone for all your phone calls and emails of support. I'll let you know what happens after I see my Doc on Thursday.

A little withdrawal

Well everything is going pretty well. I went off of one of my meds on Friday and the withdrawal is extremely annoying. It is giving me vertigo, light headness and making me weepy. Some of the craziest things are making me cry. It's actually amusing and what makes my eyes tear up. The worst is the dizziness. I found the list of possible withdrawal symptoms posted by the FDA and they include:

The Envelope Please...

The results of all my tests are in and it's official... NO MORE CANCER!!!

There are no more active cancer cells in my body. The mass in my chest is only residual scar tissue that surrounded the tumor. The actual tumor is gone. YEAH!!!

It's a Boy!!

Well I got the results of last weeks CT today. Everything is clear, except the mass in my chest hasn't changed since my last CT in November. Dr Guzley thinks the mass is just residual scar tissue, so I am having a PET scan next week to see if there are any active cancer cells.



Also my husband gave me my Valentines present today. Check him out! Isn't he too sute!

Nuttin's up!

Just a quick post to let everyone know I'm fine. Been a little tired, but actually managed to hit the double digits in hours I worked this week (10.5)! Woohoo!

It's Miller Time!

Had my last scheduled Chemo today. Now I get 3 weeks off and will have a CT on Feb 2 to check the progression of the last tumor in my chest. I'll meet with my Hematologist on Feb 10 to go over the results and determine what will happen next. There are 3 possibilities:

1. Everything is gone and I don't need anymore treatment! (I doubt that will happen because the tumor only shrank 1 cm in 4 mos and it is still 4x5 cm as of Dec 1)

2. If the tumor is not responding to Chemo anymore, then radiation.

3. If the tumor is still responding, 4 more sessions of Chemo. (probably starting on Feb 10)

On the plus side, thanks to the break in my chemo schedule, Superbowl is 3.5 weeks after my last treatment, so we will be hosting a Superbowl Party at our house. If you are in the area and would like to stop by, click on the email us link on our Home Page and we will send directions.

Chemo's a No Go

My port was drawing fine, had beautiful blood return and took the drip for all the premeds fine. When they went to push my Adriamycin (the wonder drug that turns your Urine red and makes your hair fall out) it wouldn't go in. So I had too go for a dye study and have a clot dissolved. Chemo is rescheduled for Monday. WhooPee!! At least it means I can go to my office party tomorrow night. As my husband says I'll be sauced up.

Chinese Christmas Party

Well, it's chemo time again. Luckily a couple of friends of ours, Chris & Mary, threw a Christmas party on an off-chemo week. It was so much fun. This is the best group of people I have ever known. They all have such huge hearts and are so kind, but yet you can be a total smart ass with them and it's all cool. Here's a pic of me & Jerry at the party. As you can see the eyebrows are giving up their fight. I'm down to about 12 eyelashes. I thought I'd put some mascara on the other day to make them look larger. HA! Mascara looks pretty funny on just 12 lashes. I looked like some wierd anorexic Tammy Baker!

CT Results

Well I had a CT scan last week and the results are pretty good. The tumors in my neck are completely clear. The tumors on either side of my diaphragm have shrunk to almost gone and the mass under my right sternum/clavical region has gone from 6x5 cm to 5x4 cm. I have 3 more Chemo's left then we'll do another CT. If CT still looks good then we'll do another PET scan. If there are still active cancer cells, but no more shrinkage then we'll have to do radiation.

Thanksgiving is Canceled

Well Thanksgiving is canceled. I just wansn't feeling up to cooking and playing hostess, I've been too cranky. Every treatment it gets a little harder and takes a little longer to bounce back. Since I always do Thanksgiving at my house it is a bit depressing. Mom and Jeff are now eating alone, Misty has the twins and Nana's going to our friend Ginger's to spend the day with her family. They are all looking forward to it. It's better off this way anyway. The twins have been sending a cold back and forth with each other for the last week, Jeff is teaching 2nd grade and a lot of his kids are sick, so at least this way we are keeping the germs out of the house. It's a bit depressing, but I have to think of my health. I like Thanksgiving because it is the one day a year I cook usually and our house is structured very well for entertaining. This was also the last year Jeff and the girls will be here for the Holidays. He ships out for Navy OCS on Jan 22. I already bought everything so I am going to pop the Turkey in the oven and prepare the stuff that won't keep. A 12 pound Turkey for only me and Jerry! Last year I made a 16 pound bird for 18 people. We are going to be eating Turkey for weeks!



The good news is I've raised about $2,000 on Ebay in the last 60 days selling off a good portion of my collection. I figure I've sold about 350-400 doughboys so far. I still have about 200 left, but most will be gone soon. It's a little sad for me because they took so many years and travels to accumulate them all, but I'll keep a few as mementos. The treatments have gotten to the point where I can only work about 10 hours on treatment weeks and about 20 on non-treatment weeks. Since I'm paid by the hour, it is a little rougher for us. Luckily the money raised paid off my Husband's 2001 Elantra, so that's one less car payment. His was the big payment ($300, I was sending $500) and mine is only $150, so That's an extra $500 a month to play with. After I'm off all these meds we'll be able to roll his payment into mine and hopefully I'll have a clear title as a birthday present in April. I've been stockpiling meds before December 31 so I can get the most out of my deduction for this year on my taxes and will be able to save a little on meds next year. I have enough Vicodin set aside to kill an elephant now.