My journey - dose dense carbo/taxol week 1/2/3/4/5/6/7/8/9

Mary~Guess what~U R doing just fine~So far--so good!

 Good morning Mary,

For each of us, there will be similarities as well as differences.  Chemo is always a safe choice, unpleasant though it is. 

As for the “cold” foods, my oncologist had told me to eat or drink as many “cold” foods or drinks as possible.  Since chemo circulates throughout the whole body and can damage the gums, keeping something cold in your mouth is a preventative measure.  So you did well to consume “cold things”.

As for your port, the healing process is now finished.  I always felt more comfortable sleeping on my left side rather than on the right side where my port was located.  I seemed to feel more pressure in my neck area because of the port.  But I found that putting a small soft pillow between my shoulder and head allowed me to be more comfortable if I wanted to sleep on my right side.  It seemed to take pressure off that side.

As for snacks during the day of infusion, there are no restrictions.  At our oncology lab, volunteers come in each day around the noon hour and serve the patients lunch.  If a family member or friend accompanies the patient, they are served as well, and there are a variety of sandwiches to choose from plus chips, cookies and drinks.  That’s always a pleasant relief.

As for nausea, even though your “workup” included something for nausea, I never experienced nausea because during the entire period of time I was on chemo, I took my prescribed anti-nausea med- Granisetron (Kytril) faithfully each morning when I first awoke.  As a matter of fact, I took the pill to bed with me along with a bottle of water, and upon awaking each morning, I took it the first thing.  Often I would awaken just to use the bathroom, but when my eyes opened, that was when I took the pill long before I ate breakfast. 

As for eating, I included as much “high protein” food as I could during the day.  My husband would make me milkshakes with “BOOST” as the liquid and would put in a scoop of whey (30 grams per scoop) and he also put in a big spoon full of peanut butter.  I liked it to be as much the consistency as ice cream of possible.  I set a goal of at least 60 grams of protein a day.  Protein bars are good as a snack too.  I always ate scrambled eggs with a good amount of cheese in them for breakfast.  That served me well.

As for your Benadryl making you sleepy, it was a part of the IV prep that I had prior to the actual infusion of Carboplatin/Taxol.  For the first two series of chemo treatments, the Benadryl gave me “restless leg syndrome” that lasted for an hour.  This was the most uncomfortable part of the treatment.  I simply could not keep my feet and legs still.  But at the very first of the Benadryl, I would feel “woozy” and my speech became slurred, and the words ran past my thought process faster than I could get the words out.  My tongue was thick and I couldn’t pronounce my words.  While it put others to sleep, and they looked like they were just taking a nap, I was jittery and didn’t sleep.  So for this last series, my nurse, cut down the Benadryl by half as a prep, and it solved the jitters for me. 

As for sleep, it has never been a problem, and I haven’t needed anything for sleep.  As for food having a “metal taste” it is suggested that one eat with plastic utensils.  That might help.  Now the taste of food may change as in tasting “bitter”, that is normal.  I’ve discovered that chocolate has begun to taste too bitter, and I never had plans to remove chocolate from my diet.  And I will tell you that I “counted my last calorie” the day I was diagnosed with Stage IV cancer.  But for some foods they loved before just will not continue to taste the same.  But after treatments are over, food preferences should return to normal.

And although you didn’t mention it, I have reminded “new chemo patients” of the importance of keeping one’s mouth moist at all times.  One should use the softest toothbrush often and message the gums when they brush their teeth.  And this time around, I purchased two big bottles of BIOTENE oral mouth rinse, and have used it several times during the day, preferably every 4 hours as per directions on the bottle.  Chemo dries out the mouth and can damage the gums, so mouth maintenance is very important.  I know I gave you multiple references in our first correspondence, but mouth maintenance is ever so important.  Mouth sores are horrible and eating will be a chore.  This is covered in my letter to “Brian” http://csn.cancer.org/node/301646.

So take note--stay out of the sun.  Your skin is going to be extremely sensitive. 

Fatigue is normal, so don’t push yourself to do what you do not feel like doing.  Chemo responses can be cumulative. Sometimes patients think, “Ahhhhh I feel great”, but wait a bit longer.  You’ll be the exception and not the rule if you “get by” without problems of some kind.  But that is to be expected. 

You’ve mentioned Taxol, so don’t be surprised if hair follicles are affected.  They usually are and that can take place from the second or third week along.  So just in case you have that experience, and don’t be surprised if you do, you might want to keep a sample swatch of hair so that you can match the color of your natural hair.  Now you’ll be blessed if it only becomes thinner, and doesn’t “turn loose”.  I’m now completely bald for the third time, but the good part is that I’m still here and my hair will come back, even though it grows ever so slowly.  So, if over time, you experience hair loss, count it as a positive.  While it’s removing hair on the outside of your body, it is taking away cancer on the inside, and that’s a trade-off worth having. 

Lastly, my oncologist set me up an appointment for the following day of each treatment.  My treatments were scheduled for once every 3 weeks, and the following day after my usual treatment, I returned for hydration, and a Neulasta injection (to enhance my white blood cell count) to build up my immune cells. 

So based on what you’ve shared with us, your first treatment has been quite normal.  Thanks for letting us know how your first treatment went.  For me, it was the most traumatic since I never knew what was going to happen.  Now the hair loss was a big “let down” for me, even though but I knew that it was a possibility. So by the third time around, I didn’t bother to go to the hairdresser, I just shaved it off myself with hair clippers, and my husband helped in places that were hard for me to reach.  To compensate, I purchased some false bangs from the Internet.  I just ordered another set of “curly bangs” because my others are straight.  They’re great to wear under a turban.  It makes me feel and look much better.  The girls in the lab never knew I didn’t have any hair until I told them.  Oh sure I’ve got wigs too, but the bangs and a turban are much more comfortable, so that’s what I wear for “every day” wear.  Now if I were going to some special function, then I would “dress up” more, and put on a wig, but for doctor’s visits and shopping, a turban fits the bill for me. 

So that’s all for now Mary.  Just thought I would compare notes and let you know that so far you’re “normal.”  Here’s hoping that when you have a repeat scan, that it will show “no evidence of disease (NED)” and then you will heave a sigh of relief and say, “It was worth all the discomfort”. 

Love Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

P.S.  So just in case you’re interested, here is one place where I found the curly bangs.

 (And no I’m not in the business of selling wigs nor am I a stockholder!)

Along with the “curly” bangs, I also ordered another set of straight bangs, but unfortunately, they were no longer in stock.  And that’s understandable, since wigs are far more in demand.  If you should desire to order anything, you might want to call them at their toll-free number first and ask if they have it in stock, or if it has been discontinued.  I ordered another set of bangs that looked even thicker than the ones that I have.  They just sent me an e-mail saying that they had been discontinued, so to avoid that scenario, a call would be in order.  That’s what I will do from now on.

• http://www.voguewigs.com/all-wigs.html?gclid=CP3TtZ-9q9ICFcWCswodHTINGA

• http://www.voguewigs.com/all-hairpieces.html#/filter:category_hierarchy:Hairpieces$252FBangs

[This is the one I’ve ordered.  I’ve loved the straight bangs that I already have.

This is what my straight bangs look like.  I wear them under a turban all the time.  They’re comfortable and look natural.  And they’re easily washable as well.

• http://www.voguewigs.com/straight-bang-hair-addition-jon-renau.html

  ___________________End of suggestions_____________

Miss Mary, you are getting there.  One step at a time.  Eating is important - as much as you may not feel like it.  I never believed that would be a problem for me, I like food, but chemo took away the interest.  Keep pushing yourself - you can do this.  Also, I see newbies comment on how they read old posts because they are full of information.  You may not know it right away but I have no doubt your posts are helping others.  It helps to get it out and those that have already walked these steps in the journey can let you know how they experienced similar things.

MaryVig said:

Week 6 (round 2 completed)

Yesterday was the final infusion of round 2 (Taxol only in a dose dense carbo/taxol regime). My blood count was up at day 8, but was down at day 15.... but high enuf to allow chemo this time. So week 6 was completed.

This week I noticed the following: energy is ok; nausea controllable with steroids on days 9 and 10 (day after infusion and the day after that) and rantidine in the morning everyday; my scalp itches and has red dots which showed up on day 13 of round 2 (oncologist sez this will go away and us follicalitis); had an hour on day 14 when I had a bunch of floaters in my left eye; my lymphnodes in my neck seemed swollen days 12-13, and felt like I had the beginning of a sore throat... but no temperature. Oncologist didn't seem worried, but the chemo nurse was very concerned at the neck and floaters as no one else has made those comments. Today is day 16, and nausea usually has set in by now, but I've been very good at keeping good in stomach, so feeling good. I'm still waiting to hear back the genetic testing. No word yet.

during my Ct scan 8 weeks ago, nodules on my thyroid were found, and confirmed by ultrasound later. The Endrocronologist wants me to have a biopsy of 2 of the nodules but my blood counts are not allowing that to occur. More to come on that topic.

thanks NoTimeForCancer for your comments. I see this thread is being read and hope my experiences are helpful to others. I know it has helped me immensely to read everyone else's experiences. 

Well Good morning Mary~

This is your “Taxol hairless buddy Loretta”

You know they say “the third time is the charm.”  Well that isn’t true for everything.  If it were, I would be “cancer free” now.  Now feeling like a “Carbo/Taxol” veteran, I thought I would share some of my experience with you relative to nausea meds.  I note that you are having a problem with that.  For the record, I have never had the first instance of nausea due to taking chemo.  I credit that to taking my “Granisetron” anti-nausea med every morning when I first woke up for the duration of my 6-treatment period.  I would take a bottle of water and the Granisetron pill and put it on a table beside my bed.  With the dawning of the morning, I took the pill.  I also had a prescription for prochlorperazine – Compazine for “break-through nausea”, but I never had to use that.  That was to be used in addition to the Granisetron if it didn’t do its job.  So this is my “unpaid” for commercial for Granisetron.

I did experience nausea for 2 days one time after I had a “Neupogen” injection, and worse than that, I had to go to the ER within 4 hours for a pain shot after my spine started jerking and extreme bones pain.  Neupogen & Neulasta for injections that build up the white blood cell count.  After that I told my doctor, “Don’t ever give me that again.”  And I switched to “Neulasta” and had no side effects from that.  But during those 2 days of nausea, I “got a taste” of what it must feel like for poor cancer patients who wrestle with nausea on a regular basis.

My chemo routine was a 6-treatment regimen with each dose 3 weeks apart.  After each treatment, I would return the following day for hydration, steroids & a Neulasta shot.  I never had to miss a treatment session due to low blood count.  I have just finished my last treatment on January 19, 2017 with good results.  Some lessening of fluid in the peritoneal space around my lungs and no new outbreaks of tumors elsewhere.  This is as good as it is going to get for me.  My prayer is for long periods of “progression free survival” (PFS). 

Thus far, I’ve had same Carbo/Taxol combo in 2013, 2015 & 2016 with targeted radiation in 2014.  And like I’ve said before, the 1st time hair loss was sorta’ devastating—2^nd time not so much so—3^rd time—no big deal!   

Thankfully, nausea has never been a problem.  There are 2 references below that detail the results of clinical studies for Granisetron (Kytril) and ondansetron (Zofran).  In both cases, one in a study for children with Leukemia, and the other study recently released, Granisetron has outperformed Zofran!  Have you thought of asking your oncologist to change your anti-nausea meds? 

Also, I’ve included a Chemocare.com reference relative to side effects of Taxol and Nausea.  Some may not have noticed the word NADIR, but this is the low point at which your immune system is susceptible to germs!  So I included an explanation about NADIR. 

Incidentally, my head is now covered with “white fuzz” and my “eyebrows” have returned.  My eyelashes are beginning to be visible.  Mary, your continuing comments are helpful and your positive attitude is encouraging.  Here’s hoping that your spirits will continue to be “high” and your CA-125 count “low” after you finish this “shall I say torture treatment?” 

Love Loretta

1.  https://www.ncbi.nlm.nih.gov/pubmed/22081189

“Ondansetron versus granisetron in the prevention of chemotherapy induced nausea and vomiting in children with acute lymphoblastic leukemia…

2.  http://www.mdedge.com/obgynnews/article/112000/gynecologic-cancer/extended-release-granisetron-superior-antiemetic

“CONFERENCE COVERAGE

Extended-release granisetron superior antiemetic for cisplatin chemotherapy

Publish date: August 27, 2016…

3.  http://chemocare.com/chemotherapy/drug-info/Taxol.aspx

Taxol - Generic Name: Paclitaxel - Other Trade Name: Onxal ^TM

Drug Type: - What is Taxol? Taxol is an anti-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug. Taxol is classified as a "plant alkaloid," a "taxane" and an "antimicrotubule agent."  (For more detail, see "How Taxol Works" section below)…

Side Effects: - Important things to remember about Taxol side effects include:

• Most people do not experience all of the Taxol side effects listed.
• Taxol side effects are often predictable in terms of their onset and duration.
• Taxol side effects are almost always reversible and will go away after treatment is complete.
• There are many options to help minimize or prevent Taxol side effects.
• There is no relationship between the presence or severity of Taxol side effects and the effectiveness of the medication.
• The Taxol side effects and their severity vary depending on how much of the drug is given, and/or the schedule in which it is given.

The following Taxol side effects are common (occurring in greater than 30%) for patients taking Taxol:

• Low blood counts.  Your white and red blood cells and platelets may temporarily decrease.  This can put you at increased risk for infection, anemia and/or bleeding.
• Hair loss
• Arthralgias and myalgias, pain in the joints and muscles. Usually temporary occurring 2 to 3 days after Taxol, and resolve within a few days.  
• Peripheral neuropathy (numbness and tingling of the hands and feet)
• Nausea and vomiting (usually mild)
• Diarrhea
• Mouth sores
• Hypersensitivity reaction - fever, facial flushing, chills, shortness of breath, or hives after Taxol is given.  The majority of these reactions occur within the first 10 minutes of an infusion.  Notify your healthcare provider immediately (premedication regimen has significantly decreased the incidence of this reaction). 

The following are less common side effects (occurring in 10-29%) for patients receiving Taxol:

• Swelling of the feet or ankles (edema).
• Increases in blood tests measuring liver function.  These return to normal once treatment is discontinued. (see liver problems).
• Low blood pressure (occurring during the first 3 hours of infusion).
• Darkening of the skin where previous radiation treatment has been given (radiation recall - see skin reactions).
• Nail changes (discoloration of nail beds - rare) (see skin reactions).

“NADIR - WHAT IS NADIR?

When discussing chemotherapy side effects often you will hear the word nadir, mainly in reference to the blood counts, particularly white blood cell count and platelet count.  Nadir basically means low point, however further explanation may clarify this term in connection with chemotherapy treatment.

Nadir Affects Blood Cell and Platelet Counts

When chemotherapy is given it not only affects the rapidly dividing cancer cells but it also affects some of the normal cells of the body. 

These effects particularly occur on normal cells that divide rapidly such as, the hair, the lining of the mouth, the cells lining the intestinal tract and the blood cells (white and red blood cells as well as platelets). 

In the bone marrow, the spongy inner core of the larger bones in the body is where blood cells are made.  There are very immature cells called stem cells, from which the various types of blood cells develop.  These stem cells do not reproduce quickly and are less likely to be affected by chemotherapy. 

As cells are maturing there are certain phases in which they divide faster. It is during these times that the cells are most sensitive to chemotherapy.

The more mature cells can continue to become fully mature cells for several days after chemotherapy is given.  When these cells live out their life span, the circulating supply is depleted and the blood counts fall to a low point, the nadir.

Emerging from the Nadir and Returning to Normal

The blood counts will return to normal within three to four weeks, after the body's feedback system has told the stem cells in the bone marrow to increase production and begin making new cells. 

If chemotherapy is given at the time that the stem cells in the bone marrow are increasing their production this could cause permanent bone marrow damage.  The timing of chemotherapy cycles takes this process into account.  For example some chemotherapy drugs are given on day 1 and day 8 of a 28-day cycle. 

The second dose of chemotherapy, one week after the first, is tolerated because the stem cells have not yet increased their production (they are still at the nadir).  They have not increased their production because the second treatment is given before the count of the circulating blood has reached its nadir.

The nadir time is usually about 10 days after treatment, although this may vary depending on the drugs given. 

The concern during the nadir time is that the body's first line of defense against infection, white blood cells (WBC) and the platelets, which help to clot the blood, are low leaving a person more susceptible to infection and bleeding. 

The next dose of chemotherapy is given only after a person's blood counts have left the nadir and recovered to a safe level.

More Chemotherapy Information:

Chemotherapy Terms

Chemotherapy Protocols - How Chemotherapy Works

How Chemotherapy Is Given

How Doctors Decide Which Chemotherapy Drugs To Give

How Long Chemotherapy Is Given

How To Tell If Chemotherapy Is Working

Cancer Cells & Chemotherapy

Types of Chemotherapy

Targeted Therapy

The Immune System

About Immunotherapy

Hormone Therapy

Chemoprotective Agents

Chemotherapy Resistance

Short & Long Term Side Effects of Chemotherapy

Nadir

Fluids: Drink fluids throughout the day like water and juices.  Many persons on chemotherapy need to drink at least two quarts of fluids per day.  Ask your doctor or nurse if this applies to you.  Also, if you are vomiting it is important to replace the fluids lost to avoid getting dehydrated.

• Avoid drinking liquids at meals. 

Eating hints: Eat small amounts of food throughout the day.   Eat before you get too hungry.  Eat dry foods such as dry cereal, toast, or crackers without liquids especially first thing in the morning. Avoid heavy, high fat and greasy meals right before chemotherapy. Do not eat your favorite foods during this time.  They will no longer be favorite foods if you begin to associate them with nausea and vomiting episodes.

Surroundings: Avoid strong odors.   Don't lay flat for at least two hours after eating.  Rest by sitting up or reclining with your head elevated.   Fresh air and loose clothing may be helpful after eating.  Exercising after eating may slow down digestion and increase discomfort…

Drugs That May Be Prescribed by Your Doctor:

When suffering from nausea caused by chemotherapy treatments, your doctor may prescribe drugs such as Emend (aprepitant), Zofran (ondansetron), Kytril (granisetron), Anzemet (dolasetron), or Aloxi (palonosetron).

Your doctor may not prescribe any anti-nausea drugs because not all chemotherapy causes nausea and vomiting.  However, if the chemotherapy is likely to cause nausea and vomiting, your doctor may prescribe one or more of the following common anti-nausea medications: 

• aprepitant (Emend^®)  --dolasetron (Anzemet^®) -- granisetron (Kytril^®) -- ondansetron (Zofran^®) -- palonosetron (Aloxi^®) 
• prochlorperazine (Compazine^®) -- promethazine (Anergan^®),(Phenergan^®) -- lorazepam (Ativan^®)
• metoclopramide (Reglan^®) -- dexamethasone (Decadron^®)  -- famotidine (Pepcid^®) -- ranitidine (Zantac^®)

These can be prescribed for you to take before, during, and/or after chemotherapy. As you can see there are many different medications that your doctor can prescribe to control these symptoms.  It may take trying a couple different medications before finding the right match for you…”

____________________________End of references_______________

Mary, I am sure you were devasted about hearing not only could you not start Round 3 and having to have a blood transfusion.  I had never heard about blood needing to be irradiated - that's interesting...and I agree with you re: those who donate blood.  When they have donations drives at work I always thank the people.  They say it is no big deal but I tell them - it is!!!  They know what I have been through, and even though I never needed a blood transfusion, they know I mean it having seen it from the other side. 

I remember my head itching like crazy as my hair was falling out.  It also hurt like when I used a curling iron years ago and would pull it too hard.  I would just gently press my hands on my head.  

I hope you rebound and you can get food down.  I was prescribed Dexamethason for nausea.  Trader Joe's makes little ginger cookies that have pieces of ginger in them.  I don't care for ginger but I did nibble on them.  If you can eat, try getting protein in as much as possible.  Yogurt, cheese, nuts, meat...I know it is easier said then done.

Please continue to tell us how it is going Mary.  Hugs dear one.