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BRIAN from the North~Things I learned during my chemo treatments~Hope it will B helpful 2 U & Mom~Wishing her all the best!

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Hello again Brian,

This letter is an answer to what I promised you earlier about things I found helpful during my chemo sessions.  I decided to put it in a separate topic so that others might find the information useful as well.  Hopefully this will help you to understand what your Mom may experience during her chemo sessions.  It’s good to know that your Mom has tolerated her first chemo well. 

The way people respond to chemo will vary from one person to another, even though the chemo combinations may be the same as far as the types.  So below my name I will give you “a ton of” references as what one can expect while having these chemo treatments.  So you might want to print this letter out and read it when you have at least 15 minutes! As for Mom, it may be that she tolerates all of her treatments extremely well.  It may be also that as she progresses, the treatments may take a toll on her physically.  Either result will be normal, keeping in mind that chemo is never a “piece of cake”, but it is tolerable and can be very effective.  It has been for me.

When my husband went through his pre-op chemo treatments of Carboplatin and 5-FU, he fared much better than did I when I had my chemo treatments of Carboplatin and Taxol.  My first treatment was so awful, I truly almost died.  It wasn’t 2 minutes into my treatment that my whole spine went into a jerking motion similar to that of a “jack hammer”.  I felt dizzy, faint and almost passed out.  My husband said I turned “red” all over.  The nurses immediately yanked out the tube that went into my medi-port and began giving me more “pre-meds” to counteract my awful reaction.  Afterwards I said to the nurse, I thought I was going to die.  To which she responded, “I will tell you that we have coded some patients.”  My first visit lasted from 8:15 A.M. until 7:00 PM that night, and it is one I shall never forget.  Now I will tell you that now since it didn’t happen to your mom.  Thank God.

As to your Mom’s CA-125 count, yes it is normal for the tumor marker number to decrease as the treatments continue.  My number was never that high, and all patients do not necessarily have a high number.  No matter the beginning number, a decrease is what we all want to see. My treatments consisted of 6 separate sessions three weeks apart.  I had a CT scan after the first 3 treatments to see how effective they were.  Then I had another CT scan approximately 3 weeks after completion.  My first treatments began in early February of 2013.  The tumors were reduced in number and size at that time enough to qualify for Cytoreductive surgery (CRS).  I had surgery July 1, 2013. 

When I began to have symptoms akin to intestinal blockage, I began a second series of chemo treatments.  Chemo was the same as before.  Second series began June 11, 2015.  In June of 2015 my highest CA-125 count was 183.  By December the count was down to 10.  Since that time it has risen once again to 157 as of 3 weeks ago, so this tells me that things are not “stable”.   I am now in a “holding pattern”.  Although my CA-125 is rising considerably, I’m not rushing to “try” something else until a more debilitating physical condition arises.  At some point, it will, and when it happens, it happens.  It’s best not to spend my days trying to project possible problems and agonizing over the weeks ahead—fretting over things over which I have no control.  If I do that I forfeit the joy of living today.  I can choose to live while I’m living, or spend my days wallowing in a worry pit.  And so, I hope that is the attitude that your mom will cultivate.  And by the way, you don’t have to tell her everything I may say to you here, if she tends to worry.  I’m just trying to let you know some of the things that she might encounter, as well as things that have been helpful for me.

With that in mind, I will tell you that chemotherapy treatments are cumulative.  As for my husband, when he underwent pre-op chemo/radiation for Esophageal Cancer, Stage III, his side effects were minor in comparison to mine.  But like my husband, my chemo side effects were minimal compared to what some others have experienced.  So it’s altogether possible that your mom will do well.  If she escapes constant nausea, mouth sores, and diarrhea, consider that a great success.   

By week two after both my first series of treatments in 2013 and again in 2015, my hair began to come out.  I had read that with TAXOL hair loss was a possibility.  The first time around was a bit more dramatic and I hoped that it would only be “thin”, but then it became so “scraggly” that I had my head shaved.  So the second time around in 2015, I just had it shaved right away.  From the start, I did order some pretty wigs and some fake bangs as well.  So sometimes I wore a wig when I went to the doctor.  (Yes they can be hot, no matter the cost.)  At other times, I wore a turban with the false bangs.  The girls in the lab didn’t know that it wasn’t my natural hair.  So here is that link just in case your mother experiences hair loss. My oncology nurse gave me one of these booklets about hair pieces and wigs.  When my hair began to fall out, I “saved a swath” of it so I could use it to more closely match my natural hair color. 

1.  http://thewigcompany.com/face-framer-regular-length-halo-headband-hairpiece/p/J182/http://thewigcompany.com/hairpieces/vc/hairpieces/

Incidentally, at my clinic, there are places where ladies have donated their wigs when they no longer need them.  There are ladie’s groups that make head coverings and donate them to the clinic.  So this may be something of help to your mom should she begin to lose her hair.  The hats and/or knit caps are free to anyone who wants one.

I will tell you that summer is coming on, and she should definitely stay OUT of the sun while she’s in treatment.  So she should be careful. One of our cancer friends had a very badly sunburned arm.  He had been driving with the window down and had his arm resting on the window.  As much as I have always loved “basking in the sun”, I’m much more careful now.  So a nice straw hat with a brim might be of help.

Okay Brian, here are some things that I found helpful during my chemo treatments.  Incidentally I consult with my oncologist each month, and I have a CA-125 test monthly. 

The second time around, during my treatments, I always went back the following day and had a hydration treatment, and also an injection of Neulasta.  (Another med for building up white blood cells is Neupogen.  However, I only had one injection of that, and the bone pain was so intense that I had to go to the ER and get a shot to lessen it.  So I never used that one again.)  The next time my nurse gave me a Neulasta shot.  It helps keep your white blood cell count up so that your immune system is not so depleted.  Some patients have such a low WBC that they cannot have their normal chemo treatment.  It’s best if chemo is given at regularly-scheduled times without interruption.  A low WBC weakens ones immune cell count and in turn, makes one more susceptible to germs.  It would be best to avoid crowds and stay away from anybody who is sick.  I also carry a small bottle of hand sanitizer in my purse.  I use it all the time, especially after touching public bathroom doorknobs, grocery cart handles, etc.  Yes, I’m germ conscious! Sometimes I have had to visit the Emergency Room.  That is an unnerving experience when you’re in a room full of other sick people.  I’ve feared catching something before I could get out of there, so I’m not beyond using a mask while I am in there. 

And, of course, your mom will have a (Complete blood count) CBC before each treatment.  If the WBC is too low, she will not be able to have a chemo treatment on that day.  So it’s important to keep a check on that.  And hydration is extremely important, because chemo has a way of draining the body of fluids and making one extremely weak.  I was severely fatigued even more so the first time around because I didn’t “insist” on hydration following each treatment, nor did I get a Neulasta injection.  But the “second time around” I “told” the doctor that I wanted hydration and a Neulasta injection after each treatment.  He readily said, “No problem.” 

Incidentally, it would be good if someone can accompany your mom on her visits and take notes of what the doctor tells her.  When my husband and I would go for his consultations, I would take notes, so I could remember what we discussed during the visit.  Mom shouldn’t be timid—lots of the words that doctors use will be “foreign” to her the first time around.  I ask questions, and even say, “How do you spell that?”  Then I come home and do some research on the web, but only from reputable sources.  When I went with my husband to his visits, I took notes.  His surgeon frowned on our using a tape recorder.  We asked him early on if we could use a recorder.  He said, “Have you ever heard one of those things in court?”  So we didn’t use it.  But my oncologist is completely different.  He doesn’t mind if we tape our conversations.  We turn on our camera and my husband does a video.  I try to do that each time.  It’s very helpful, and I always hear more the second time around than I did at the office. 

Also my oncologist told me that during my chemo treatments, I should keep something cold in my mouth for at least the first 24 hours after a chemo treatment.  The chemo goes all over our bodies, and it can affect the teeth and gums.  And so cold foods, popsicles, ice chips, etc. would be good. Chemo can dry out the gums and it’s best to keep the mouth moist.  There is a good reference for mouth care during chemo treatments in my long reference list.

He also told me that rinsing my mouth often during the day with a baking soda solution would help.  So I took a bottle of water (one teaspoonful of baking soda to 8 oz. of water) I kept one in each bathroom, and would rinse my mouth often during the day, and even when I would awake during the night.  I never had mouth sores.  Pity the poor person who has mouth sores because they will not be able to eat the way they should.

Okay with all that in mind these are things I did during my treatments. I’m sure others may have tips of their own, but these are things I found helpful. 

You said your mom’s anti-nausea pills were working well.  That’s great.  First, I took an anti-nausea pill each morning before breakfast.  My nausea med was “Granisetron” (KYTRIL).  I put a bottle of water and the pill on my night table, and when I first opened my eyes, I took that pill.  I never had nausea.  So that is like a pre-emptive strike—better taken before the nausea begins.

Secondly, I ate foods that were high in protein because that provides energy.  I ate at regular times during the day, even if I wasn’t “hungry.”  I ate cheese eggs and drank milk for breakfast.  I also kept a protein count and wanted to be sure I consumed at least 60 grams of protein each day.  Even then I was still “tired”.  By the way, it’s best not to drink a lot of liquid with the meal.  Better to wait till an hour afterward or so according to one of the videos on Chemotherapy by Dr. David Cathcart.  I will give you his web link.  He has a great mini-series of clips on different aspects of the effect Chemotherapy has on one’s body.

Thirdly, I bought a container of “Performance Whey Isolate” from Costco in the vanilla flavor.  Each serving provides 30 grams of premium whey protein, made exclusively from Isolate.  Every day my husband would make me a “thick” milkshake consisting of vanilla ice cream, a scoop of whey, a big spoonful of peanut butter, and sometimes a Butterfinger candy bar all broken up prior to putting it in the mix.  He would put just enough milk to make it like a soft ice cream that I ate with a spoon.  I’ve never been fond of milk shakes, but some people love smoothies.  This whey dissolves easily in whatever it is put in.  It can be put in puddings as well. 

There is also BOOST that comes in different flavors that can be mixed with the whey & ice cream mixture.  I also bought that at a box store.  It comes in cases of 24 and has 15 grams of protein per bottle.  It is less expensive when I buy a bigger quantity.  Of course, it would be best to try one to see how you like it, before you buy a whole case of 24, naturally.   It’s also necessary to drink as much water as possible during the day, but not so much with meals. 

Moving around as much as possible, and keeping up my regular daily routine was helpful.  Our house is 184 feet from the street.  It was all I could do to walk up and down the driveway two times.  Perhaps extreme fatigue will not be what your mom experiences, but if she does, it is normal.  That was my biggest problem.  Sometimes I was so weak that I would use a wheel chair when I went to see my oncologist.  The distance between the lab and his office was further than I felt like walking.  I’m not doing chemo now, but my energy level has never been the same as before I had cancer. 

Speaking of “walking”, chemo left me with some mild neuropathy in my lower left leg and foot.  Sometimes that happens and sometimes it goes away after treatments are completed.  But I do have some residual effects from that, so I feel more secure walking with a cane when I go away from home.  I don’t need it at home though.  When I lie down at night, my left foot can feel a bit numb.  So don’t be surprised if that should happen to your Mom.  Now I don’t mean to discourage you, I just thought I would mention these things as potential possibilities for one that has had chemo treatments, but it doesn’t always happen. 

Over the counter supplements, (OTC) should be discussed with her doctor.  I was Vitamin D deficient, so I took a Vitamin D tablet, and also a calcium tablet, as well as some fiber pills for regularity and a fish oil tablet.    But needs will be different for different patients, depending on their medical problems.  I’m not saying she should take these, but adequate nutrition and hydration are ever so important.

So Brian if your Mom can maintain her normal daily routines as much as possible, going places, being with friends, and keeping a positive outlook she will weather this storm much better.  Even though a diagnosis like this turns your life upside down, it doesn’t mean that we can’t experience more “up” days rather than down days.  Hopefully upon completion of these treatments, she will feel much better for a long period of time.  I hope she continues to tolerate the treatments well, and that her CA-125 counts will be dramatically reduced.  Once she has completed the treatments, she should begin to feel much better in a matter of a few weeks.  Glad that you wrote.  The more you know, the more confident you will be that Mom is receiving the best of care.  Your loving care and concern makes her feel more secure—that’s for sure.    

All the best,

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

P.S.  Brian here are helpful links regarding chemotherapy.  This is “homework” assignment in no particular order! J  

2.  https://www.nlm.nih.gov/medlineplus/ency/article/007217.htm

CA-125 Blood Test – “…CA-125 is a protein that is found more in ovarian cancer cells than in other cells.  This blood test is often used to monitor women who have been diagnosed with ovarian cancer. The test is useful if the CA-125 level was high when the cancer was first diagnosed. In these cases, measuring the CA-125 over time is a good tool to determine if ovarian cancer treatment is working…”

3,  https://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000032.htm

Dry mouth during cancer treatment –“… Rinse your mouth 5 or 6 times a day for 1 to 2 minutes each time. Use one of the following solutions when you rinse:

          1 teaspoon of salt in 4 cups of water

This medicine is used to stimulate the growth of "healthy" white blood cells in the bone marrow, once chemotherapy is given.  White blood cells help the body to fight infection. This is not a chemotherapy drug…” 

5.  http://chemocare.com/chemotherapy/drug-info/Neupogen.aspx

“…What Neupogen Is Used For:---Neupogen is used to stimulate the production of granulocytes (a type of white blood cell) in patients undergoing therapy that will cause low white blood cell counts.  Neupogen is used to prevent infection and neutropenic (low white blood cells) fevers caused by chemotherapy. Neupogen is a support medication.  It does not treat cancer…”

6.  http://www.medicalnewstoday.com/articles/158401.php

Chemotherapy: Types, Uses, Side Effects…”Chemotherapy (chemo) drugs interfere with a cancer cell's ability to divide and reproduce. Chemo drugs may be applied into the bloodstream to attack cancer cells throughout the body, or they can be delivered directly to specific cancer sites…”

7.  http://www.rxlist.com/chemotherapy/article.htm

“…Chemotherapy works by stopping or slowing the growth of cancer cells, which grow and divide quickly. It can also harm healthy cells that divide quickly, such as those that line your mouth and intestines or cause your hair to grow. Damage to healthy cells may cause side effects. Often, side effects get better or go away after chemotherapy is over…”

8.  http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx

Carboplatin - Trade name:Paraplatin – (Brian this site will be all about Carboplatin and possible side effects including a time period when blood counts will be at their lowest levels during the treatment cycle.

“…Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.  - Onset: None reported-Nadir: 21 days-Recovery: 28 days…”

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

“Taxol - Generic Name: Paclitaxel - Other Trade Name: Onxal…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)…”

10. https://www.youtube.com/watch?v=MEqhDOOCKKU&p=895121939FDA58E1&playnext=1

“Chemotherapy Cancer Treatments & Side Effects : Nutrition for Chemotherapy Side Effects” – Dr. David Cathcart says “Good nutrition for reducing chemotherapy treatment side effects includes eating several small meals, sticking with bland foods and avoiding liquids with meals. Ask a doctor about vitamin or mineral supplements that may help with chemotherapy…”

11.  http://www.cancer.gov/publications/patient-education/eating-hints

Eating Hints: Before, During, and After Cancer Treatment-Brian this is a 58 page “pdf” file, so you might not want to print it all out, but it’s very good.

_____________________End of references_____________________

Anonymous user (not verified)

Thank you so much for your post! The information you provided will help me care for my mom.

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