"Pheach"~Welcome 2A woman's world re Ovarian Cancer~links U might find helpful 4 Mom~DX-Treatment-Ch

LorettaMarshall · June 2018

Hello “Pheach”

Although you haven’t given us specifics about your mom’s age, symptoms, etc. you have told us that you are her sole caregiver. You’ve also wished all of us who are currently being treated for Ovarian Cancer all the best. That goes for those who are enjoying remission as well. And for that we thank you. We pray that your mom will respond well to the chemotherapy of Carboplatin/Paclitaxel (Taxol) regimen. It has served me well, even though it is not without side effects. We just have to “endure” unpleasant side effects in order to achieve maximum good effects. Results will vary from patient to patient, but it has proven to be effective for the largest group of women who have been diagnosed with Ovarian Cancer, although there are other drugs as well. So we pray along with you that the “pain” will be worth the gain—a long period of remission—or even more desirable the eradication of her cancer altogether. So absent many particulars, I have chosen to put your letter on a “separate topic forum” in the event others are new here, and have need of additional information relative to Ovarian cancer and chemotherapy drugs.

So here is your letter as posted yesterday, Friday, June 22^nd and my reply follows:

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Your letter here:

https://csn.cancer.org/comment/1632364#comment-1632364

Jun 22, 2018 - 12:18 pm - Pheach

“My mom too has just been

My mom too has just been diagnosed with mucinous overian cancer. She had a full hysterectomy last month. The pathology report came back and doctors said she has a rare type of ov cancer and that the traditional taxol/carbo might not do anything but there's not other options available. So she's starting her first chemotherapy today. I'm also her sole primary caregiver. I'm sitting here in the hospital watching her sleep while the drips of chemo is getting into her body. I'm praying that the chemo works. I'm praying that she will be able to tolerate the side effects. I just want to see her healthy and happy again. Wishing the same for everyone else who's going through cancer .”

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My reply here:

Dear “Pheach”

Trusting that your mom has had a SECOND opinion, and is being treated by a gynecologic oncologist, I’m sending along some info that you might find helpful. Believe me, we here always are saddened when another person writes in and tells us that they too, or a relative, or good friend has also been diagnosed with Ovarian Cancer. You, as the sole caregiver to your mom are carrying a heavy weight on your shoulders. While you haven’t given us a “Stage” of OC that Mom has, you have stated that she has had a complete hysterectomy and as of Friday, she has begun chemotherapy. While references below state that mucinous tumors can be benign, I am left to assume that your mom’s was indeed cancer.

And yes, as has been the case for many years now, seems that most of us women diagnosed with Ovarian Cancer, have been given Carboplatin/Paclitaxel (Taxol) as the standard treatment.

As one that was first diagnosed with Peritoneal Carcinomatosis, and at a SECOND opinion, also learned that the primary cancer was most likely in my ovaries, it was first recommended that I undergo a series of Carboplatin/Paclitaxel (Taxol). The stage was IV.

Knowing that this chemo can have many side effects, it was my “only” option, and so I said, “I’ll give chemo a try one time.” Afterwards, I also had Cytoreductive Surgery, which included removal of my ovaries, fallopian tubes, spleen, gallbladder, omentum and sections of my intestines. These were classified as “non-essential” organs! At age 36 I had already had my uterus removed, or that would have been removed as well.

If others are like me, the first thought after hearing that I had Ovarian Cancer, was “What does this involve and will I live or die?”

Now almost 5 and ½ years later, God has not seen fit to call me home yet. And by His strength I carry on. Having just completed my 4^th series of Carboplatin and Taxol I am still alive. Now to be honest, each series leaves me a bit weaker physically than prior treatments. Side effects vary for each of us, but I’m the type that is open to all possibilities as a realist. And quite naturally, I hope for the “best” but know that at times my pains have been such that I say, “I can’t live long like this.” I really don’t know anyone that has sailed through chemo without side effects. So I will just give you a good reference, in case you do not already have one that will list possible side effects.

Let’s hope you are the kind that can ask questions and have an oncologist who will answer you truthfully, even though what we hear isn’t what we always want to hear. Your mom needs an “advocate, counselor, comforter and it looks like “you’re it.” Now “Pheach”, I will tell you that I am bald for the 4^th time since early 2013. The first treatment didn’t cause my hair to turn loose, but by the 3^rd weekend, the hairbrush really was precisely that—a brush full of hair. Although your mom will be disappointed, it is the price we pay for “staying alive.” Taxol is the culprit—so don’t be surprised if this should happen to your mom as well. I wear mostly turbans and some “false” bangs and no one is the wiser.

Now there is a lot more that I could say, but you have mainly introduced yourself and shared your mother’s plight with us, so I really don’t know the extent of your research so far. So while it’s often difficult for me to be brief, I’ll just say that I hope that your mom’s side effects will be few and that the chemo will serve to kill the cancer. For me as a Stage IV, my best hope is for a long period of PFS—“Progression Free Survival.” So far I have felt that the chemo has given me about 10 months at most of reprieve, before something else crops up. I still enjoy a good quality of life, even with “residual neuropathy and fatigue” as my “close companions!”

Note that I am only sharing my personal experience, but although the docs say that the chemo might not work for your Mom, it has worked for me. It could also WORK WELL for your Mom. And so that is my prayer for her. I know the heartaches that a cancer diagnosis can bring having first been a caregiver to my husband who was diagnosed with advanced Stage Esophageal Cancer back in 2002. Thank God that He has allowed my husband to have a total recovery and now he is my caregiver. (More importantly-ultimately the Lord Himself is my real caregiver. I could have died years ago.) So both as a caregiver and a Stage IV cancer patient myself, I’m wishing your dreams will come true, and that you and your mom will have many more years to enjoy each other’s presence. After all, we moms pride ourselves on being irreplaceable.

Love & prayers,

Loretta (now age 79 years and 4 months old)

P.S. I forgot to say that I hope your Mom has had a “medi-port” implanted. It makes administration of chemo so much easier on the patient. It saves wear and tear on the veins. Even if she doesn’t have a port now, it isn’t too late to have one placed by a radiologist. It’s done on an outpatient basis. I would certainly request one for the duration of your mom’s treatments. My chemo was prescribed for 6 sessions—each one being 3 weeks apart. In the middle of the treatment plan, my oncologist ordered a PET/CT scan to check the progress of my treatments. So it is hoped that this will be the case for mom, and that she will see that indeed the chemo is reducing her “tumor markers” considerably.

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1. http://news.cancerconnect.com/cancer/newly-diagnosed/

“Newly Diagnosed

A new diagnosis of cancer can be a shock, making you feel out of control and overwhelmed. Getting informed can help alleviate these feelings. Remember, very few cancers require emergency treatment; you have time to learn about your diagnosis and treatment options, ask questions, and get a second opinion. This section is designed to help you address your initial questions before you move forward with your treatment.
Newly Diagnosed Topics

What is Cancer?

Cancer is not one disease, but many diseases that occur in different areas of the body. Each type of cancer is characterized by the uncontrolled growth of cells. Under normal conditions, cell reproduction is carefully controlled by the body. However, these controls can malfunction, resulting in abnormal cell growth and the development of a lump, mass, or tumor. Some cancers involving the blood and blood-forming organs do not form tumors but circulate through other tissues where they grow.

A tumor may be benign (non-cancerous) or malignant (cancerous). Cells from cancerous tumors can spread throughout the body. This process, called metastasis, occurs when cancer cells break away from the original tumor and travel in the circulatory or lymphatic systems until they are lodged in a small capillary network in another area of the body. Common locations of metastasis are the bones, lungs, liver, and central nervous system.

The type of cancer refers to the organ or area of the body where the cancer first occurred. Cancer that has metastasized to other areas of the body is named for the part of the body where it originated. For example, if breast cancer has spread to the bones, it is called “metastatic breast cancer” not bone cancer…”

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2. http://news.cancerconnect.com/types-of-cancer/ovarian-cancer/ovarian-cancer-overview/

“Pheach” I would suggest you just start with this page, and then proceed to each of the other topics listed on the left side of this page.

“Overview of Ovarian Cancer”

They are:

Management of Ovarian Cancer

“Overview

Women's Cancers Videos

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3. https://www.mayoclinic.org/diseases-conditions/ovarian-cancer/diagnosis-treatment/drc-20375946

“…Diagnosis

Pelvic exam

Tests and procedures used to diagnose ovarian cancer include:

Pelvic exam. During a pelvic exam, your doctor inserts gloved fingers into your vagina and simultaneously presses a hand on your abdomen in order to feel (palpate) your pelvic organs. The doctor also visually examines your external genitalia, vagina and cervix.
Imaging tests. Tests, such as ultrasound or CT scans of your abdomen and pelvis, may help determine the size, shape and structure of your ovaries.
Blood tests. Blood tests might include organ function tests that can help determine your overall health.

Your doctor might also test your blood for tumor markers that indicate ovarian cancer. For example, a cancer antigen (CA) 125 test can detect a protein that's often found on the surface of ovarian cancer cells. These tests can't tell your doctor whether you have cancer, but may give clues about your diagnosis and prognosis.

Surgery. Sometimes your doctor can't be certain of your diagnosis until you undergo surgery to remove an ovary and have it tested for signs of cancer.

Once it's confirmed that you have ovarian cancer, your doctor will use information from your tests and procedures to assign your cancer a stage. The stages of ovarian cancer are indicated using Roman numerals ranging from I to IV, with the lowest stage indicating that the cancer is confined to the ovaries. By stage IV, the cancer has spread to distant areas of the body.

Treatment

Treatment of ovarian cancer usually involves a combination of surgery and chemotherapy.

Surgery

Operations to remove ovarian cancer include:

Surgery to remove one ovary. For very early stage cancer that hasn't spread beyond one ovary, surgery may involve removing the affected ovary and its fallopian tube. This procedure may preserve your ability to have children.
Surgery to remove both ovaries. If cancer is present in both your ovaries, but there are no signs of additional cancer, your surgeon may remove both ovaries and both fallopian tubes. This procedure leaves your uterus intact, so you may still be able to become pregnant using your own frozen embryos or eggs or with eggs from a donor.
Surgery to remove both ovaries and the uterus. If your cancer is more extensive or if you don't wish to preserve your ability to have children, your surgeon will remove the ovaries, the fallopian tubes, the uterus, nearby lymph nodes and a fold of fatty abdominal tissue (omentum).
Surgery for advanced cancer. If your cancer is advanced, your doctor may recommend chemotherapy followed by surgery to remove as much of the cancer as possible.

Chemotherapy

Chemotherapy is a drug treatment that uses chemicals to kill fast-growing cells in the body, including cancer cells. Chemotherapy drugs can be injected into a vein or taken by mouth. Sometimes the drugs are injected directly into the abdomen (intraperitoneal chemotherapy).

Chemotherapy is often used after surgery to kill any cancer cells that might remain. It can also be used before surgery...”

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

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

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

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

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7. http://www.breastcancer.org/tips/hair_skin_nails/hair_loss

“Why and How Hair Loss Happens

Hair loss occurs because chemotherapy targets all rapidly dividing cells—healthy cells as well as cancer cells. Hair follicles, the structures in the skin filled with tiny blood vessels that make hair, are some of the fastest-growing cells in the body. If you're not in cancer treatment, your hair follicles divide every 23 to 72 hours. But as the chemo does its work against cancer cells, it also destroys hair cells. Within a few weeks of starting chemo, you may lose some or all of your hair.

If you are having chemotherapy, your hair loss may be gradual or dramatic: clumps in your hairbrush, handfuls in the tub drain or on your pillow. Whichever way it happens, it's startling and depressing, and you'll need a lot of support during this time.

Some chemotherapy drugs affect only the hair on your head. Others cause the loss of eyebrows and eyelashes, pubic hair, and hair on your legs, arms, or underarms.

The extent of hair loss depends on which drugs or other treatments are used, and for how long. The various classes of chemotherapy drugs all produce different reactions.

The timing of your treatments will also affect hair loss. Some types of chemotherapy are given weekly and in small doses, and this minimizes hair loss. Other treatments are scheduled every three to four weeks in higher doses, and may be more likely to cause more hair loss.

Chemotherapy drugs

Adriamycin (the “A” in CAF chemo treatment) causes complete hair loss on the head, usually during the first few weeks of treatment. Some women also lose eyelashes and eyebrows.
Methotrexate (the “M” in CMF chemo treatment) thins hair in some people but not others. And it's rare to have complete hair loss from methotrexate.
Cytoxan and 5-fluorouracil cause minimal hair loss in most women, but some may lose a great deal.
Taxol usually causes complete hair loss, including head, brows, lashes, pubic area, legs, and arms.”

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8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4261626/

Mucinous Tumors of the Ovary: Current Thoughts on Diagnosis and Management

“Abstract

Mucinous tumors of the ovary represent a spectrum of neoplastic disorders, including benign mucinous cystadenoma, pseudomyxoma peritonei, mucinous tumors of low malignant potential (borderline), and invasive mucinous ovarian carcinoma.

These tumors are related closely to each other and are distinct from other histologic subtypes of epithelial ovarian neoplasms from a clinical, histologic, and molecular standpoint. A continuum appears to be present from benign to borderline to malignant, which is different from other types of epithelial ovarian cancer. Mutational profiles are also distinct, as KRAS mutations are common, but p53 and BRCA mutations are infrequent. These characteristics lead to specific biologic behavior and guide both clinical management and research efforts in patients with mucinous ovarian tumors.

Keywords: Mucinous, Mucinous tumor, Gynecologic cancers, Gynecologic cancer, Ovary, Carcinoma, Tumor, Borderline, Pseudomyxoma, Neoplasm, Mucinous ovarian tumors, Oncology…”

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9. https://academic.oup.com/annonc/search-results?page=1&qb={"Keywords1":"mucinous ovarian cancer"}&SearchSourceType=1

Mucinous epithelial ovarian carcinoma

T. J. Perren - Annals of Oncology, Volume 27, Issue suppl_1, 1 April 2016, Pages i53–i57, https://doi.org/10.1093/annonc/mdw087 Published: 02 May 2016

“…Abstract

Mucinous tumours involving the ovary may be benign, borderline, or malignant.

Malignant tumours may be primary or metastatic. Differentiation between primary and metastatic involvement of the ovary is critical for optimal patient management. Even among skilled pathologists, this distinction can be problematic, as can the distinction between borderline ovarian tumour of intestinal type and well-differentiated invasive primary mucinous ovarian carcinoma.

Primary invasive mucinous ovarian carcinoma and mucinous carcinoma metastatic to the ovary do have distinct patterns of macroscopic and microscopic involvement which will reveal the correct diagnosis in many cases. There are also well-recognized patterns of immunohistochemical staining that can further assist in this differentiation. As a result of the application of these histopathological techniques, the incidence of primary invasive mucinous epithelial carcinoma has fallen over recent years from ∼12% to ∼3%.

However, even in recent multicentre clinical trials such as GOG 182, expert pathological review suggests that ∼60% of tumours originally classified as primary invasive mucinous carcinomas were in fact metastatic tumours to the ovary. Review of outcome data for patients with mucinous carcinoma entered into multicentre trials suggests that this subtype of disease has a particularly poor prognosis in comparison with other subtypes of ovarian carcinoma.

Historically, patients with mucinous epithelial ovarian carcinoma (mEOC) have been treated in the same way as other subtypes of ovarian carcinoma. While there is undoubtedly a response rate to platinum-based chemotherapy, retrospective reviews of individual centre experience suggest that this is substantially lower than for high-grade papillary serous carcinoma and in the order of only 30%–40%. The mEOC trial was established to investigate the possibility that the combination of capecitabine and oxaliplatin (chemotherapy drugs more commonly used in colorectal carcinoma) may be superior to conventional carboplatin and paclitaxel chemotherapy.

In a 2 × 2 factorial design, there was also a randomization to bevacizumab. Unfortunately, this trial closed early, 5 years after initiation having recruited just 50 of a proposed 322 patients. mEOC is now characterized as a type I tumour with an identifiable stepwise progression from a premalignant lesion, through non-invasive, to invasive malignancy.

Molecular characterization of mEOC reveals it to be distinct from other subtypes of the disease with a KRAS mutation occurring in 40%–50% of patients.

Other gene abnormalities including HER2 amplification in ∼19% also occur. This raises the possibility of the use of targeted molecular therapies which with molecular analysis of individual patient tumours could form the basis of a future clinical trial. It is, however, clear that if trials are to be conducted in this rare subtype of disease, they will need to be truly international in nature and carefully designed, possibly using an adaptive stepwise approach and will require an appropriate level of funding with a realistic assessment of likely recruitment. Associated translational research will clearly be essential.”

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10. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/mucinous-carcinoma

Last but not least, a “dictionary of cancer terms” with an audio symbol so that you can impress the doctors by knowing how to pronounce a word, even if you don’t understand it fully! Look for the “audio” symbol—click on it and you will hear the word pronounced.

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pheach · June 2018

Thank you so much Loretta for

Thank you so much Loretta for your encouraging message. Yes it is so overwhelming since everything seems to happen so fast. My mom was diagnosed with a stage II mucinous overian cancer. I tried to get a second opinion from a different hospital but had some difficulty with logistics. The new hospital said they need access to CD/slides and had us signed a release form so they can communicate with the hospital directly. Week after week there's no progress. I'm not sure what to do now since she's starting chemo already.

It is now day 2 after her first chemo treatment. She is doing well so far. I'm so nervous knowing that the bad side effects might kick in any days now.

I hope you have a long period of PFS, Loretta. Let's stay strong and count our blessings.

"Pheach"~Welcome 2A woman's world re Ovarian Cancer~links U might find helpful 4 Mom~DX-Treatment-Ch

“Newly Diagnosed

What is Cancer?

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