Lisa1984~Ovarian Cancer~Exhaustive reputable links~ALL U ever need 2 know about OC~

My Dear Lisa~

May I say “welcome” to this Ovarian Cancer forum, although honestly I know that both you and I wish we had never met.  Moreover, we wish we had never heard the word “cancer”.  However, “You gotta dance with the one what brung you!”  This is an old country saying, (no aspersions to the wonderful country relatives of which I have many!)  In this instance, it means, you’ve got to deal with whatever problem you have head-on.  So in that regard, I have included a “multitude” of references that will be of help to other Ovarian cancer women who will follow in our footsteps.

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Here is your original letter you wrote this morning, Saturday, April 14, 2018. 

https://csn.cancer.org/node/315878

“I’m 33 from Australia Perth and have recently had a full hysterectomy and 20cm.  tumor removed. I have been diagnosed with stage 3a endo cancer and start my first cycle out of 7 of chemo on the 17th of April 2018 scared would be an understatement!! I am looking for friends and any good advice I could take with me on my journey! I am having carboplatin and paclitaxel as my chemo drugs and then 5 weeks of radiation once my 7 cycles are finished. I have been told my hair will fall out, but I hope it doesn’t.  But also think I’d rather hair loss than dying. Would love to hear from anyone ”

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My comments follow:

As always I can say with certainty that each of us who read any letter from another sister who has been diagnosed with cancer says, “Oh no, not another one.”  Each of us will have different types and stages of Ovarian cancer, but will all have the same responses when we hear the words, or see them in print for the first time with our very own name attached.  I, like so many, did not get an “advance” warning that something was wrong. At the urging of one friend whose young husband had died of Esophageal Cancer, she said “Promise me if you get that pain again, you will go and have it checked out!”  I knew those were words spoken from a broken heart.  Her husband was a “fitness fellow”, ate the right foods, exercised, and took care of himself.  But at age 48, all of a sudden he found himself diagnosed with Stage IV Esophageal Cancer.  She had learned that what we discount as an aggravating small pain can be something deadly instead. 

Even though the groin pain was something new, it had only happened in the week prior, and I thought perhaps I had a hernia.  I was 74 at the time, but never hesitate to perform the work of “Wonder woman” if I see something I want to do.  I had attempted to move a “small log” on the side of my driveway.  Alas it felt like a chunk of concrete when I tried to push it over a bit farther, so one of our cars could be parked there.  Then I came into the kitchen to start preparing supper.  Where I came from here in Virginia, we have “breakfast, lunch & supper.”  So “supper & dinner” are evening meals no matter if you’re a “city slicker” or a “country girl!”  What does that have to do with Ovarian cancer—nothing, but it just denotes the time that I first “felt a small knot, about the size of a quarter” on my left side, just below my waist line.  That’s when I said to “myself”, “Have I given myself a hernia?”  And in the telling of that incident to my good friend, was when she said I should have it checked out.  But being one that does not quickly go to the doctors for every little ache and pain, I probably would not have gone, except that I had made her a promise.  And within the week was when I also felt the groin pain. 

So I made the trek to a local ER.   They asked, “Why are you here?”  I said, “I think I have a hernia!”  Two hours later a young doctor comes into my particular “cubby hole”, hands me a CT report that has as the diagnosis, “PERITONEAL CARCINOMATOSIS.”  I had no clue as to what that was, but MY NAME was at the top.  I was in the hospital for 3 days.  My husband, brought me my laptop, and I researched this cancer, and made some phone calls.  This was a STAGE IV Diagnosis.  Rarely does cancer begin in the Peritoneum, it is usually coming from a primary cancer in some other place.  And as I would learn, upon traveling to the University of Pittsburgh Medical Center, UPMC, for a second opinion 3 weeks later, a PET/CT scan and exploratory would reveal cancer in both my ovaries. 

Following the UPMC recommendations, I was to have chemotherapy at home.  They would re-evaluate my surgical choices after the chemo session ended.  At that point, no radiation was ordered.  But I had the same chemo combo that has been recommended for you.  The Carboplatin/Paclitaxel (Taxol) regimen has proven to be the most effective combative drugs for both Peritoneal and Ovarian cancer, so that was what was ordered for me.  So during the last 5 years of my life I have had a pre-op regimen of that chemo, Cytoreductive surgery, targeted radiation which was effective for 3 cancerous nodes on the Caudate of my Liver, and since then 3 other regimens of the same chemo combo.  My schedule has been a 6-regimen series—each one 3 weeks apart.  Each time it has reduced my tumors to a point where I will have about 10 or 11 months of a fairly good quality of life before the big “T” mounts another assault.  Now as a Stage IV patient, no measures that I have taken have been of a “curative” nature, but one of a “palliative” nature.  The most I hope for is a long period of “Progression Free Survival” (PFS).  So at least you are not that far along.  So enough about my OC experience.

Now Lisa, things I would stress as you journey down this road are many.  So perhaps I will just put some of them in a numerical order.  Incidentally, 20 centimeters is equal to 7.874016 inches.  OH MY!

 1.      A medi-port is a must for these treatments.  Ask for one if the doctor doesn’t suggest it!  Insist on it.  Repeated needle sticks wear down your veins.  Moreover, any meds you need going forward can be administered through the medi-port.  It is an outpatient visit, but a radiologist will put it in. It was not a painful experience.  It is placed underneath your clavicle (collar bone). 

2.      Ask for copies of all your scans & reports as they are given.  Then if you seek further treatments elsewhere at any time in the future, you will have them on hand.

3.      Research your cancer and ask lots of questions.  The more you know, the more your doctor will tell you.  I find that if you don’t ask—usually they don’t take the time to tell you.  I would never have a doctor that treats me like a number—in effect saying, “Sit down—shut up and leave the driving to me!”

4.      Always have someone accompany you for these treatments.  My treatments  last about 6 hours at the least.  First I check in at the lab, then consult with the oncologist, who checks out all the lab results to see if I am in good enough shape to continue with that particular day’s treatment.  Then I go to the area where the infusions are given.

5.      COOL foods rather than spicy or hot, on the day of treatment are best.  Chemo can damage the gums and in time, sometimes affects the teeth, and so I normally have a cup of ice chips that I “munch on” during the treatments.  And be certainly to keep your mouth moist at all times.  This helps to prevent mouth sores which can occur.

6.      Hydration is critical.  Chemo “dries the bones” and will make one extremely fatigued.  The cancer alone will make you “tired” but lack of fluids will make you feel even worse.  I always returned the following day for a hydration treatment to replenish lost fluids, as well as to have a “Neulasta” injection. 

7.      Neulasta and Neupogen are drugs given to increase the WBC.  These are immune cells and they have to be at a certain number and if my WBC is too low, the doctor will not give me the treatment that particular day.  Neulasta works best for me.  I had one injection of Neupogen at first, and the bone pain sent me to the ER for a pain killer.  So from then on the Neulasta, which is designed to work a bit slower, but has the same purpose, that of building back up the immune cells has worked well for me.  As a matter of fact, there is now a small device that can be attached to your body, that will activate itself and dispense the drug and you won’t have to return for it.  But I would always want to have the advantage of the injection which helps.

8.      STAY OUT OF THE SUN.  Chemo makes one’s skin extremely sensitive and skin will burn much more quickly. 

Well Lisa, if I don’t stop, you will be here 6 hours just reading this letter.  However, pay attention to the letter that I’ve included as a reference.  It was written to “Brian from the North” when he asked for helpful hints as his mom was about to begin a chemotherapy series.  Also I have included multiple references applicable to your cancer.  You will do well to scan all of them for your particular stage of cancer. 

As to Hair Loss—Taxol will usually see to that.  Now, it’s always traumatic the first time around.  But we all come around to the same conclusion, “It’s just hair and it will grow back—but hopefully the cancer will not return.  I’m now looking at a bald head for the 4^th time.  So now it’s just routine.  I don’t even go to the beauty shoppe to have it shaved, I just do it myself.  Oh yes, I wish that hair loss wasn’t a part of the routine, but with “Taxol”, if you don’t lose it, that will be a surprise.  By week 3 after the treatment, I was tired of hair on the pillow, and not “well distributed” on my head, so that will be the time you will probably decide, enough of this.  I have an abundance of knit caps which I wear to sleep in because with air conditioning in the summer time, your head will get cold!

I have purchased wigs.  I even went down before I began my treatments, tried on some of them to match the color of my hair, purchased one and brought it home.  And there are lots to choose from.  But when I wear one, no matter the cost, I feel like I’m wearing a swim cap.  But I know one young woman who purchased a human hair wig which is beautiful, and I would never know it was not her real hair.  So if you want to go that route, go now and match the color of your hair would be my advice.  (Always save a swatch of hair to use for comparison.  Some companies even say, “send us a swatch and we will match it for you.”)  As for me, I’m mostly wearing turbans and “false bangs” only.  No one knows it is not my hair.  So I called the wig company this morning that advertises “bangs” and inquired as to the availability of them.  She said, “If we don’t have them readily available, we will order it directly from the company.”  So that reference is here for you as well.  “Wilshire Wigs” is the company from which I ordered the “curly bangs”.  I love them.  They have a Velcro strip that adheres to the turban on the inside.  I sometimes have to pull my turban off to prove that I am actually bald.  So I always like to tell ladies about the “big bang theory”—hair bangs that is.  (I am a Creationist myself.)

Okay I think I’ve said enough here.  Needless to say, I wish you the very best possible results going forward.  Brace yourself for a rough ride and then if you happen to not suffer too many side effects, you at least will be prepared.  Call your doctor and/or nurse immediately when something happens that you are not sure about.  Sometimes things are more urgent than you might realize.  I’m not the only one answering on this forum, but I am the “longest-winded” one.  Believe it or not, there is more that I could say, but the references below will tell you ALL you need to know about Ovarian cancer and chemotherapy. 

And oh, one more thing, I talk openly about my cancer with my friends.  My husband is an Esophageal Cancer survivor of 15 years plus now, and I’ve outlived my handicap placard (good for 5 years)!  And speaking of HANDICAP parking.  In our state, we can fill out an application on the web, and have the doctor sign it.  The state is quick to return it.  And believe me, you will appreciate the ability to not have to “park way away from the building” when you’re going for treatments, or other places.  That’s just an aside and isn’t a requirement as part of your regimen.  But it has been a blessing for me.

So Lisa, lastly for the tenth time, I am both sad that we have met, and glad that we have met.  I am an open, honest, tell-it-like-I-see it, kind of person.  For some, that may seem a bit harsh, for others, they appreciate it.  So write as often as you feel the need, and I’m certain someone “will be home” to answer.  Since I’m in the middle of a chemo series of Carboplatin/Paclitaxel (Taxol) Treatment series, I don’t always feel up to trying to reply.  You can send me a private message as well though if there is something you want to discuss with me in particular, that you might not want to “tell the world!”  That goes for anyone else who might read this as well. 

So may the wind be at your back, doctors at your beckon call, and may God bless you with a totally successful experience. Remembering always that:

 “Life isn’t about waiting for the storm to pass.  It’s about learning how to dance in the rain!”

Love Loretta

(Peritoneal Carcinomatosis/Ovarian Cancer Stage IV)

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P.S.  These references are numerous and in no particular order.  It is meant as a “tutorial” as to what is involved with the diagnosis and treatment of Ovarian Cancer. 

1.      https://www.cancer.gov/types/ovarian

“The ovaries and fallopian tubes are part of the female reproductive system. There is one ovary and one fallopian tube on each side of the uterus (the hollow, pear-shaped organ where a fetus grows). The ovaries store eggs and make female hormones. Eggs pass from the ovaries, through the fallopian tubes, to the uterus. The peritoneum is the tissue that lines the abdomen wall and covers organs in the abdomen. Part of the peritoneum is close to the ovaries and fallopian tubes…”

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2.      https://www.cancer.gov/publications/dictionaries/cancer-terms/def/carboplatin-taxol-regimen

[Lisa ~ this is a great reference.  Not only does it give a meaning to the word, but an “audible audio” of how it is pronounced.] Example follows:

carboplatin-Taxol regimen

listen (KAR-boh-pla-tin-TAK-sol REH-jih-men)

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3.      http://ovarian.org/about-ovarian-cancer/what-is-ovarian-cancer/types-a-stages

“Types & Stages of Ovarian Cancer

Types of Ovarian Cancer

There are more than 30 different types of ovarian cancer, which are classified by the type of cell from which they start. Cancerous ovarian tumors start from three common cell types:

• Surface Epithelium - cells covering the outer lining of the ovaries
• Germ Cells - cells that are destined to form eggs

5.      http://www.cancerresearchuk.org/about-cancer/ovarian-cancer/treatment/treatment-decisions

A team of doctors and other professionals discuss the best treatment and care for you. They are called a multidisciplinary team (MDT).

The team includes a surgeon who specialises in treating women's cancers (a gynaecological oncologist) and a medical cancer specialist (an oncologist). It should also include a gynaecological cancer specialist nurse.

The treatment you have depends on:

• where your cancer is
• how far it has grown or spread (the stage)
• the type of cancer
• how abnormal the cells look under a microscope (the grade)
• your general health and level of fitness

Your doctor will discuss your treatment, its benefits and the possible side effects with you…”

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6.       https://www.targetovariancancer.org.uk/information-and-support/z-ovarian-cancer

“A to Z” of Ovarian Cancer

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7.      https://www.medicinenet.com/ovarian_cancer/article.htm

[Another good site for Ovarian cancer facts]

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8.      https://www.medicalnewstoday.com/articles/159675.php

“…Stages

If ovarian cancer is diagnosed, the next step is to identify its stage and grade.

The stage of a cancer refers to the cancer's spread.

There are different ways of staging cancer. The American Cancer Society uses a four-stage system.

Stage 1: Cancer cells affect only the ovary or ovaries and have not spread to another area.

Stage 2: The cancer has affected one or both ovaries and also other organs within the pelvis, such as the uterus, fallopian tubes, bladder, or rectum.

Stage 3: The cancer affects one or both ovaries and either the lining of the abdomen or lymph nodes in the back of the abdomen.

Stage 4: The cancer has spread to other parts of the body, outside the peritoneal cavity. This cavity includes the abdomen and the pelvis. Areas that may now be affected include the liver, spleen, and the fluid around the lungs.

Identifying the stage and grade will help the doctor to decide on the best treatment.

However, the stage and grade of ovarian cancer alone cannot predict how it is going to develop…”

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9.      https://www.mayoclinic.org/diseases-conditions/ovarian-cancer/symptoms-causes/syc-20375941

“Overview - Ovarian cancer

Ovarian cancer is a type of cancer that begins in the ovaries. The female reproductive system contains two ovaries, one on each side of the uterus. The ovaries — each about the size of an almond — produce eggs (ova) as well as the hormones estrogen and progesterone.

Ovarian cancer often goes undetected until it has spread within the pelvis and abdomen. At this late stage, ovarian cancer is more difficult to treat and is frequently fatal. Early-stage ovarian cancer, in which the disease is confined to the ovary, is more likely to be treated successfully.

Surgery and chemotherapy are generally used to treat ovarian cancer…”

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10.  https://medlineplus.gov/ovariancancer.html

“…Basics

§  Summary

§  Start Here

§  Symptoms

§  Diagnosis and Tests

§  Prevention and Risk Factors

§  Treatments and Therapies…”

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11.  https://www.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/how-diagnosed.html

(American Cancer Society)

“…Early Detection, Diagnosis, and Staging

• Can Ovarian Cancer Be Found Early?
• Signs and Symptoms of Ovarian Cancer
• Tests for Ovarian Cancer
• Ovarian Cancer Stages
• Survival Rates for Ovarian Cancer, by Stage
• What Should You Ask Your Doctor About Ovarian Cancer? …”

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12.   http://ovarian.org/about-ovarian-cancer/what-are-the-signs-a-symptoms

“…About Ovarian Cancer

• What is Ovarian Cancer?
• Am I at Risk?
• What are the Signs & Symptoms?
• How am I Diagnosed?
• Treatment Options
• Newly Diagnosed
• Recurrent Disease…”

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 13.  http://csn.cancer.org/node/301646

My letter to Brian as to things that were helpful to me during my chemotherapy sessions of Carboplatin/Paclitaxel (Taxol)

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14.  http://chemocare.com/chemotherapy/side-effects/hair-loss-and-chemotherapy.aspx

15.  https://www.thewigcompany.com/wigs/vc/wigs/

16.  https://www.wilshirewigs.com/hairpieces/women-s/bangs/curly-bang-by-jon-renau-curly-bang.html

[My note:  This where I ordered my “curly bangs”]

17.  https://www.voguewigs.com/?gclid=Cj0KCQjwzcbWBRDmARIsAM6uChU1mKbjIPKAn3xcxIWGzttG0yEPwJY2pXJcuo16Xv0C42jAAOMHNSAaApkkEALw_wcB

18.  https://www.voguewigs.com/250-halo-hairpiece-look-of-love.html

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

20.  http://chemocare.com/chemotherapy/drug-info/Paclitaxel.aspx

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21.   https://www.cancer.gov/publications/patient-education/eating-hints

“Eating Hints: Before, during, and after Cancer Treatment…”

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22.  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…”

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  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
• 1 teaspoon of baking soda in 8 ounces of water
• ½ teaspoon salt and 2 tablespoons baking soda in 4 cups of water…”

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23.    http://chemocare.com/chemotherapy/drug-info/Neulasta.aspx

“…Neulasta - What is this drug used for? 

• 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…” 

• 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)…”

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24.   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…”

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