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.

Happy 10th Chemoversary to me!

 


Happy 10th
Chemo-versary!



I told Jerry we’d stop celebrating chemo-versary at 10 years, maybe it was getting to be a bit much.  He said we were going to keep celebrating because every chemo-versary is another year he has his wife with him. So, even after this one, we will keep celebrating.
 
To celebrate, I got my first mammogram.  Put it off for 2 years, dreaded getting
it.  Was in and out in 45 minutes and the
hardest part was trying to keep my balance when they were trying to get a
certain angle on my medi-port scars. 
This is one instance where I think big boobs are a blessing.  You just slap that girl up on the plate and
the top plate comes down, a gentle squish, 20 seconds and all done.  I think ladies with small boobies have it
rougher because there is probably some tugging involved to get the girls to
stay in place.

 

I have been fortunate in that even though my Hodgkin’s was
advanced (Stage 3B), we were able to treat successfully and I have had no recurrence.  One thing I do find peculiar is that know
that my immune system is suppressed from irreversible damage done by the
cancer, I actually get sick less.  Weird,
huh? 

 
Part of it is that I do pay more attention to people sniffling
around me, stay properly hydrated, and take vitamins religiously.  I think a larger part is that I had a very
strong immune system to begin with even though it didn’t seem like it. 

 

When I was little, I remember my mom sending me to play with
Shauna when she had the chicken pox hoping I would get them and get it over
with (it took another 7 years, damn younger brothers) and having perfect
attendance.  I just didn’t really get
sick except the occasional earache.  Fast
forward 20 years and if someone sneezed near me I got the flu!  Total reversal!  This went on for almost 8 years.  Thankfully Hodgkin’s is a slow progressing
form of Lymphoma or I might not be here today.

I look back on it now as my body was busy fighting the cancer undetected
for several years and figured,
“Hey, I’m a little busy in
here.  I’ll handle keeping these tumors
at bay, but you are gonna have to take one for the team and handle the
sinusitis. Deal?”

 

 

Today is my 7th Birthday (or Chemo-versary)… Happy Chemo Birthday to Me!!

Today marks 7 years of being cancer free and 5 years of being “Liver healthy”.

Looking back on my battle with Advanced Hodgkin’s Lymphoma, it almost seems like it didn’t really happen.  Of course I will always bear the physical reminders in the form of the many scars on my body, but other long term effects do make themselves known in my day to day life.

I occasionally still get headaches that started during treatment, but thankfully, that is the only physical side effect that remains.  After many MUGA scans, my heart is still strong and healthy

It took 2 years after chemo for my liver to regenerate back to a healthy state after starting to fail in Jun 2004.  My liver actually worried me more than the cancer for a while.  If my liver was too far gone to save there was a possibility of needing a transplant and I had no family options to match for a living donor.

Of course Jerry would give me anything if he was a match, but my mother was morbidly obese at around 300 pounds so she was out; my full brother Ken was into alcohol and drugs and my younger half brother Greg was born with underformed kidneys so his liver is already picking up their slack and my father took 2 weeks to decide if my life was even worth a phone call so I could get chemo so I knew he wouldn’t bother getting tested.

It took 2 years of making sure I was properly hydrated every day (carried a liter bottle with me everywhere and drank 2+ a day) so my liver could focus on doing its job and regenerating itself.  That may sound strange but if your not properly hydrated your kidneys can’t function at 100% and your liver has to pick up their slack in addition to it’s regular duties.  Sort of like when you have a slacker co-worker and you constantly have to pick up their slack 😉

I carried bottles around with me so much then, that now if I am in the car and I don’t have a bottle, I freak out a little.

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. 


After the months of uncertainty, it was finally determined that my liver was failing and I had just been diagnosed with Advanced Hodgkin’s Lymphoma.  My best chance to halt the liver failure prior to reaching a transplant level and to give me the highest possible chances of beating the Hodgkin’s into remission was to start chemotherapy as soon as posssible.

The one stumbling block was family medical history.  Of the 4 drugs I needed to take, one was toxic to heart muscle and while my MUGA showed my heart looked good, knowing my father had a history of heart problems so my Doctor wanted to know what he had in order to determine how much medication to give me and if I could take it at all.

At this point I had to Google my father because I had no contact information for him.  Once locating his phone number, I proceeded to leave messages for him, even going as far as to say if he didn’t want to talk to me, the least he could do was call my Dr and answer his questions.  I left all my contact info, my Doctors contact info and email addresses on his answering machine.

Almost 2 weeks later, he finally decided to call me back.  After spending an hour on the phone with him and me crying, the last thing he said to me was that he had to talk to his wife to see if it was okay if he talked to me in the future.  I never heard from him again…

With everything I was going through I was just happy to start treatment.  It wasn’t until after my treatment was finished and the odds looked good that I was going to be okay, that it dawned on me:

My father took almost 2 weeks to decide if his first born childs life was worth a phone call!

That was when I finally gave up on my father as my younger brother had done so many years ago.  I don’t know why it took me so long, maybe because I remebered more being older, I just always had hoped that things would change.  Maybe if he had sent one Get Well Soon card or even inquired once as to how my treatment was going, things would be different.

Instead of admitting he had done some things wrong and trying to start over, he used his wife as an excuse for his actions and showed how much he really “cared”.”

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. 

While this is great news for those patients not yet finished building their family, there may still be difficult roads ahead.

My husband and I were not able to have children so this did not apply to us.  HOWEVER, in June 2011 while undergoing an ultrasound at the OBGYN’s office for other reasons, it was revealed that my left ovary had suffered shrinkage and my right ovary had been damaged to the extent that it was difficult to locate.  I have had no other illnesses or injuries other than chemotherapy that could explain what were normal ovaries a decade earlier showing this much damage other than the ABVD for my Hodgkin’s Disease.
While getting pregnant would not have been out of the question, it may have been more difficult.
So this is my advice to you…
If you are planning on continuing your family after treatment, you may want to look into having some of your eggs harvested and frozen prior to treatment.  It is a difficult time when you are diagnosed with cancer, but take the extra time to consider this if you want children after treatment.
I don’t know if the same effect can take place on the testes, but since they all start out as the same tissue I would imagine it could and as such, you may also want to consider banking some sperm. 
It is better to have it and not need it, than to need it and not have it
That’s my two cents anyway

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!!