October 2013 Chemotherapy

Schoolcouncelor, you and family are in our prayers.

Pam, thank you for your regards. My 2nd day of 1st CT tx is normal. Sleeping and eating ok. I can feel constipation coming. Facial redness after I got out for ah hour walk - without thinking about the skin sensitivity now....hope that would cool down......will start Neupogen shot tomorrow for 5 days. Hope I can handle it.

My oncologist connected me with another lady who just finished ACT and radiation last month. We are of similar age and she is an angel. We first connected the day before my surgery and since then we had been writing to each other. She mentioned cold cap as an option that may apply to my case so as not to lose any hair. There are also many proven success.

I wonder none of us mentioned this. My husband reminded me that one of the book we read saying that cold cap will prevent the medicine going to the brain area. So I guess we won't opt for that either. Losing hair is okay.....might as well kill everything within.......

Wishing everyone a wonderful weekend! Jen

Awwww Gram -- so sorry to hear about the delay. Once you get going, you want to keep rolling with it.

Sorry to hear about your fever Kim. So frustrating. How the heck can we all hold up with all of this? Wow.

Scary about the low WBC. So nerve wracking.

JenSF that is so nice that you found a buddy who gets it in real life. good score.

Ladies - I came across this recipe while researching nutritional cookbooks for cancer treatment and beyond. Thought since many of you have started your chemo, you may want to try it - and it seems easy enough if you're not feeling up to making it, the man of the house should be able to handle it! Key word...."should". I'm going to make sure I have all the ingredients on hand to make it this week - my first chemo sch for 10/24 (4th time w/a start date - we'll see if it actually happens this time). Then I'll toss in the freezer so I have it should I not feel like eating. If anyone gets a chance to try it - please post what you thought of it!

MAGIC MINERAL BROTH

This broth alone can keep people going, especially when they don’t particularly want to eat.  It’s not just a regular vegetable stock.  This pot of “yum” is high in potassium and numerous trace minerals that are often depleted by cancer therapy.  Sipping this nutrient-rich stock is like giving your body an internal spa treatment.  Drink it as a tea or use it as a base for all your favorite soups and rice dishes.  Don’t be daunted by the ingredient list.  Simply chop the ingredients in chunks and throw them in the pot, roots, skins, and all!

6 unpeeled carrots / cut in thirds

2 unpeeled medium yellow onions / cut into chunks

1 leek – both white and green parts / cut in thirds

1 bunch celery-including the heart / cut in thirds

5 unpeeled cloves of garlic / halved

½ bunch fresh flat leaf parsley

4 medium red potatoes – with skins on / quartered

2 Japanese or regular sweet potatoes-with skins on / quartered

1 Garnet yam – with skin on / quartered

1 (8-inch) strip of kombu (Iceland Kelp Seaweed)

2 bay leaves

12 black peppercorns

4 whole allspice or juniper berries

1 tablespoon sea salt

Rinse all the vegetables well, including the kombu.  In a large stock pot (12 qtrs. or larger), combine all the ingredients, except the salt.  Fill the pot to 2 inches below the rim with water. Cover and bring to a boil.

Remove the lid, decrease heat to low and simmer for a minimum of 2 hours.  As the stock simmers, some of the water will evaporate; add more if vegetables begin to peek out.  Simmer until the full richness of the vegetables can be tasted.  Add the sea salt; stir.

Strain the stock using a large coarse-mesh strainer (make sure you use a heat-resistant container underneath).Bring to room temp before refrigerating or freezing.

Broth can be frozen for up to 6 months in a variety of airtight containers for every use.

If you don’t have time to make this broth by scratch, substitute Pacific or Imagine brand vegetable stock, and an equal quantity of water, a piece of kombu, and one potato.Boil for 20 minutes and strain.

Earlier this week when I felt like I was getting a cold my best friend ran over with a bottle of elderberry concentrate.  I mixed up a glass and started to drink it.  I'm suspicious of anything that says it's a cure for some ailment, so I searched elderberry and chemo and found out it's a no-no.  People on chemo should not be drinking elderberry juice.

Today I ran errands and grocery shopped for things to get me through my second treatment.  I actually felt normal and was happy.  On my way home, my alternator went on my car and I had to have it towed to the shop.  It was a beautiful sunny day to be sitting there waiting for AAA towing.  Little things like the car breaking down, just don't matter as much anymore.  I'll deal with getting the car fixed tomorrow, today was still a beautiful, sunny, happy day.  

SpecialK,

I'll ask about the 3 weeks for H. I believe they also told me that they would be seeing me weekly for tests or flushing of the port. If I understood correctly Neulasta after Chemo, so it would be after the TCH day. I remember nausea meds in IV, but don't remember steroids. I'll see them the day before and I have written this down to ask them. I had a 2 hour class and tour. It was very informative and I wrote, but it was so much. I have a big packet that explains each drug and what is considered emergency, when to call them and how...etc.

Im really enjoying a cookbook they gave me that has a cross reference with symptoms/SE and recommendations of what to eat to help alleviate.

Its called Eating Well Through Cancer written by Holly Clegg and Gerald Miletto,MD...Book is compliments of sanofi-aventis (I guess they make drugs)

I like the recipes . I have lost 38 lbs since dx and need to lose some more. I have changed how we all eat at home, Im cuban so it was a lot of rich high cal foods when I cooked and I worked so it was fast foods a few times a week. Since I have been home, I have changed to proteins, brown rice, multigrain breads, veggies and salads about 90%. Desserts are the hardest. I need to learn to make healthy ones that my kids will enjoy. I have a daughter and 2 sons and I want to do all I can to decrease their chances of ever facing this.

Thanks,

Vivian

Hi everyone,

I am not really used to posting on boards, I have never once posted in my FB account but this definitely pulls me out of my shell. I admire the strength, openness and appreciate the tenderness, love and caring on the posts in this thread. Although I I have my family and friends supporting me, what I get here is very helpful.

I too will be starting my chemo on 10/30 and will be getting my port on my arm on the 24th. Before i got diagnosed, my pancreas was no longer working for digestion so I am taking digestive enzymes to make sure I get the nutrition from what I eat. Scared but ready to take on the challenge!

I am thinking of shaving my hair off no later than next weekend so I get to deal with it before I get physically weak. Did anyone do that at home or do you have to go to the salon?

Lili1964: thanks for the recipe. That sounds like what I am used to already when I get pancreatitis attack so I will try it later.

Msjean63: Yeah, you're car broke down but you got to enjoy the sun :-) Kudos to you for seeing the good out of a bad situation.

Wish everyone a good weekend!

hey all, any suggestions for dry mouth?

Specialk - thanks for Gatorade tip. That is helping. I am doin half water half Gatorade. My flavor for now seems to be orange

lgkgde - I'm sure everyone has suggestions.  The first you should probably try is Biotene.  They make a spray for occasional use, they make a mouthwash that others also find very good and helpful.

Feel free to suck on sugar free candy (or some like sugar free cough drops) to soothe the throat.  You can also suck on ice chips...but that is really a very temporary relief.

You can also find products online that have essential oils that contain clove, peppermint, thyme, oregano, cinnamon, etc (some or all these and others).  There are mouthwashes and toothpastes.  What these do is diff from Biotene.  These products are known to fight any fungals in the mouth (often found in chemo patients).  Doing several mouthwashes during the day is very helpful and these are all perfectly safe.  Just make sure you purchase a high quality item (there are many fakes out there that have all the chemicals "regular" toothpastes and mouthwashes have).  Since they fight fungals.....I would think they would also assist in dry mouth (and don't forget - many, many medications cause dry mouth so if you don't get relief from anything, talk w/your doctor and see if they can switch your med to something else that might be tolerated better).

Hope this helps. I am sure you will get many responses.....SpecialK is a great source and I believe she will give you some great info if she sees your post (if you don't hear from her, just send her a PM).   

today is my day 17 of my first TC session and my hair is finally falling. Went to have it cut very short, about one inch long. I feel relieved, believe it or not, that the chemo is working.

I am somewhat worried that I am gaining weight instead of losing. I am so used to eating salads and seafood and now everything has to be cooked and tons of carbs between the whole wheat bread and potatoes or rice. My appetite has increased too. No nausea at all which is great. I had steroids the day of the chemo and the day after, that was all. No Neulasta.

Isanybody else gaining weight and getting hungry?

lgkgde - I didn't really have issues with dry mouth but I pretty much had something to drink with me 24/7. It can be caused by meds and also by dehydration. I just kept one of those insulated cups with the lid and straw and sipped a lot. I think hard candy is good - I liked butterscotch and Jolly Ranchers as they didn't taste too off, and Biotene also makes a chewing gum.

Nicole - Neulasta and Neupogen are variations on the same drug and do essentially the same thing - Neupogen is given daily for a period of time whereas Neulasta is once ion the chemo cycle. I would definitely try the Claritin - it can't hurt. The function of Calritin is to decrease the swelling in the bone marrow by way of the antihistamine, so it makes sense to me that it would work for Neupogen as well. Take a Claritin (regular, not Claritin D) at least an hour prior to the injection and continue for 24 hour intervals for as long as you are getting Neupogen injections and for a few days after - or just take one a day throughout chemo. Make sure to clear this with your oncologist though. Also, a few of the ladies on the Triple Positive and/or TCH thread seemed to get good relief from their pain with Aleve. The bonus is that it lasts for 8 hours, other pain relief seems to run out at about 4 hours. I also found a lot of relief from very warm baths - I think when you are experiencing pain all the rest of your body tenses up and the warm bath (or shower) really helps relax everything.

headeast - it is common to gain during chemo - I would say at least half gain, about 10 lbs. It is not really "real" weight though because to gain a pound of actual flesh you have to eat about 3,500 calories and not burn them off. It is more likely to be fluid from steroids and the chemo agents. Most lose the extra weight about 4-6 weeks after the last infusion. I was not hungry and didn't eat all that much but I did gain - and I had a lot of swelling after my third tx.

I will be starting chemo (taxotere and carboplatin) on Oct. 28. I'm getting the port on Monday and having an EKG next week. I had chemo about 24 years ago to treat lupus; had cytoxin then. I'm not looking forward go a repeat of the experience. However, I've been assured that advances in alleviating SE's will make this time much easier. Fingers crossed!

Wrenn -- It is hard when we don't all get the same info, but I guess we have to trust that the doctors we see know best for each of our dxs and personal treatment regimens.

The onc nurses at my MO swear by the Claritin. MO doesn't put much stock in it, but says it can't hurt. With my low WBC count, I had one shot of Neupogen yesterday . Onc nurse said there was no harm in taking the Claritin, so I did, but she said just one injection was unlikely to cause the bone pain (and it hasn't). If insurance approves, I will have Neulasta for the next chemo cycle and the nurses definitely suggest Claritin for that. Also, they suggested Motrin or Alene for any pain, as long as my platelet levels are OK. So what I am hearing locally agrees with Special K.

My whole day started with my 1st Neupogen shot at 9ish am. Then some wierd feeling began at the back close to the bottom of the spine. So I guess that is bone pain?! All silly thoughts came out flying.....it couldn't be my bone issues...... No appetite. I was so lost and down and tired whole day. Didn't take any tyrenol or anything cos if it is what it is, I can manage. Evening was better. Watched 2 movies, one with Diane keaton, another one with Meryl Streep. 2 of my favorites. Reading all the recent posts were calming. Thank you. Have a peaceful weenend. Jen

Wrenn - there are many, many MO's who DO recommend Claritin (the generic is Loratadine) for Neupogen/Neulasta side effect pain.  In fact, once I receive my dx I went online to see if any medical studies were being done in my area and at several of the sites I visited, I kept coming up with the medical study of the use of Loratadine and Neulasta pain.

If interested, feel free to visit this site:  http://clinicaltrials.gov/show/NCT01311336.  It is a current study for just that.  You may want to print info out and bring to your MO.

I take Loratadine everyday for allergies.  I asked my MO if it would be less effective for Neulasta side effect pain since I've been taking it for 5-6 years.  She said it should not be less effective - it is a very commonly used over the counter medication with very little side effects.  If your MO does not have an issue with taking it with your chemo regimen....you might want to use it for some "insurance" to keep whatever pain away you can.  From many of the ladies who've started their chemo before us....it seems like the body pain side effect is extremely common.  And if taking a pretty innocent little pill for 5-7 days to avoid that pain works, I'd think most women would opt to take it (if ok'd by their MO, of course!).

I'm glad they're doing a medical study to finally settle this issue!