Feeling hopeless

LorettaMarshall said:

"Fighting Mama" is a good name on MOTHER'S DAY Tania

Good morning Tania,

I see that no one has answered your letter.  Golly I hope everyone is not feeling "hopeless" this Mother's Day.  You know we do "rock the cradle".  Just want you to know that I will be answering you in more detail later on today.  Since I am Stage IV, and been thru the "debulking" regimen, I can identify.  Frankly with research I've done on Avastin, I'm not gonna' use it.  But more about that later.  I've also had a second round of Carbo/Taxol, it reduced my tumors somewhat but not by a lot.  My first chemo regimen of same stuff was far more effective than the second.  Give that little 7-year old a good hug today and reassure her that she's loved more than she will ever know. 

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

I notice things are very quiet here too, Loretta.  I had hoped to get some diaglogue going myself since I first posted.  Hope all of you lovely ladies have a good mother's day.   My kids  are kitties and doggies and one is a lovebird.  They are my life!  

Fighting Mamma,

I think getting a second opinion is very wise.  It's great if you like your doctor, but it's always good to get an opinion from a new set of eyes.  Other options to consider are:

http://www.bruckneroncology.com/page.cfm?page=18

http://www.euro-med.us/cancer-treatment.cfm

http://www.oasisofhope.com/

Best of luck.

 Forgive the late reply, but I am experiencing great problems when trying to post on this site.  The SECURITY ERROR keeps blocking my letters.  I got one short note to you, but when I attempted to write again, I could not get the letter to post.  I have not lost count of the times I have tried to post anything.  So far the CSN site has not been able to explain to me anything that is wrong with my letters.  I have sent them “exact copies” of what I am attempting to post, and yet they have not “fixed it.”  Now tonight I sent a letter about an FDA alert warning concerning the antibiotic CIPRO.  When I attempted to submit it, the letter was BLOCKED.  So I took the reference out and submitted the letter, minus the reference, and it posted immediately.  And then, I said, “Wonder what it will do if I just try to send the web link reference and nothing else, and it went ZIP RIGHT ONTO THE SITE!  So forgive me for not getting back to you sooner.  Now I will attempt to write to you again!

 Dear Tania,

 In a sense, one doesn’t even like saying “Welcome” because this is a club no one voluntarily joins, even though everyone readily identifies with your story.  Let’s just be honest.  It’s difficult to write a letter to someone whose first words are “Feeling hopeless”.  It’s much easier to answer when one is sending us a “hallelujah” message! 

 So far there are no real “breakthroughs” or “solutions” for you or for me, just the hope of long periods between new growths elsewhere.  I’m sure that Mother’s Day was extra special for you because you could hug your daughter and say I love you.  Nothing’s more rewarding than to be able to share love with your daughter, hold her tightly and have that love returned.  For sure, you’re not ready to exit her life.  You’re a “big girl” but she isn’t and she needs you.  That is what can contribute to a sense of hopelessness when we know we have a Stage IV diagnosis.  And yet, you nor I, can have that feeling foremost on your mind every moment of the day, or you will never be free from despair.  I’ve read your remarks on your “about me” page, and I can see that you need to know much more about what’s happening inside your body, although you look great on the outside.  It’s good to know that you have a great family/friend “network.”  That will help.

 To date, I have learned that when someone is diagnosed with a Stage IV cancer, their prognosis is not as good as for “lesser stages.”  In my case of Ovarian Cancer, Stage IV, I can have “palliative” treatments that have included chemo/radiation and surgery.  None are curative.  That’s where my journey began. 

 First I found myself at a crossroads in life—a place I had never been before as far as health is concerned.   One road read, “Denial”, the other, “Acceptance”.  I chose not to travel down the Denial pathway because I had already witnessed others who took that turn, and it took them further down a road with no end in sight.  So I made a choice based on other’s experiences with cancer as well as what the PETCT indicated.    It does no good to hide my head in the sand, and pretend I’m gonna’ be okay.  And you’re not doing that either.  So it is good that you are seeking a 2^nd opinion.  You’ve said you’re going to have another session of chemo, but this time it will be a carbo/doxil/avastin combo.  I’m wondering if Sloan will recommend the same treatment regimen, since Avastin in particular, carries with it lots of severe side effects, and research and clinical trials have not found a significant improvement in that combo that would “offset” the deleterious side effects of Avastin in particular.  In consultation with my own oncologist today for my checkup, we discussed the advantages or disadvantages of this trio of drugs.  We discussed a summary of clinical trials with different combinations of Avastin.  I will give you that reference below.  You might want to bring it up when you go for your second opinion.  If it were me, I would print out a copy of the conclusions of that study, and ask if there are better alternatives. 

 As for me, ultimately, my allotted days on earth will end, not with a “whimper” but with more of a “bang”.  I fully expect problems to crop up over which I, or my oncologist, or any other medical experts, have control. Nevertheless, I’m thankful that I live in America and have access to expert medical hospitals and doctors.  I don’t think any other country compares to us.  And so I started down the “acceptance” path the first day I read my CT report that said “Peritoneal Carcinomatosis”.  Yes, it was surreal—not exactly an “out-of-the-body” experience, but I was suddenly thrust into another world and I needed to know what lay down that path.  Now we can’t know everything, but when we do learn something that is a “given”, we need to accept it.  You have said that you are stronger than you thought you could be, and that is a very good place to be.  You sound like the type of person who is willing to face this diagnosis with your eyes open.  If I’ve misjudged you, you won’t like anything I have to say.  So let’s hope we’re friends after you consider what I have written. 

 Whatever’s on your list of things you wish to do—try to make one of them a goal “to do” with your daughter soon.   (If you are feeling well enough to do it, of course.)  Pick out something that you can actually do, or go somewhere you can actually go, with your daughter to make some good memories for her.  For me, fatigue is a constant companion, but I keep on moving and every time I visit the Oncology clinic, I see others who are worse off than I am.  Things I used to take for granted are now things I am now thankful for.

 For instance, I can walk on my own power, even with some residual neuropathy.  During my first chemo treatments of Carboplatin and Taxol, I was so weak, I had to be in a wheelchair when I went to the doctor’s office.  And I didn’t have the energy to stand up in the shower without fear of my legs weakening.  I do have an appetite, and I can still see and hear.  Some might say, that’s not much to be thankful for.  Oh really?  Try doing without them, I say.  So even with my diagnosis, I have a new appreciation for the things I once took for granted, like good health for instance.  Most people I know feel that way once some major illness has stopped them in their tracks.  One day they are jogging around the track—the next day they are rushed to the hospital—the next thing they know, the doctor is saying “You have cancer.” 

 Today in the doctor’s office, I saw one poor girl obviously so nauseated, she couldn’t hold her head up.  She was so pale and slumped over in the chair, and she wasn’t over 25 or so.  I felt sorry for the fella pushing her in the wheelchair as well.  And rarely do the people pushing the wheelchair get any kudos, but I know a bit about caregivers.  It takes a special kind of person to give up so much in their own life to help someone else.  I grew up with an invalid sister, and believe me, a lot of work went into bathing her, dressing her, feeding her, etc. before she was ever “rolled out the door” to make a trip to the doctor’s office.  My mother was one of those special people.  She set an example for me in accepting the hand you’re dealt and asking God’s help to deal with it as best you can day by day.  She was a godly mother.  Her faith kept her living “above” the circumstances.  From her I learned that the same God Who gave her the ability to endure and still have a good attitude, could do the same for me. 

 In my case, I’m writing from the standpoint of one who was first diagnosed in November of 2012 with Peritoneal Carcinomatosis.  This meant that I had many large tumors floating around in the Peritoneal fluid in my abdomen.  Some here say they had been experiencing symptoms for quite a long time, but for one reason or another dismissed them.  In my case, I only suddenly felt one small knot in my abdomen.  I did go to my GP and he too thought as I did that it might be a hernia.  So he scheduled an appointment with a surgeon, but before that time arrived, I started to have some groin pains.  Another friend of mine said, “Promise me if you have that pain again, you will go to the ER.”  I said, “Alright” and dismissed it because I wasn’t experiencing any sustained level of discomfort.  But to be true to my promise, I went to the ER on a Tuesday, since I had made that promise.  They asked, “Why are you here?”  I said, “I think I have a hernia.”  Two hours later I was handed a copy of my CT scan, and I immediately recognized cancer terms although I had never heard of Peritoneal Carcinomatosis.  Now anytime I see a “sis” on the end, I research further because I know Metastasis means spread.  I quickly learned that my condition was terminal, but there were procedures that could potentially prolong my life.

 So it’s difficult for me to be brief, but I will tell you that I had a 2^nd Opinion at University of Pittsburgh Med. Ctr.  There a PET/CT scan revealed cancer in my ovaries as well.  They performed “exploratory surgery” and found too many large tumors to proceed with further surgery.  My instructions were to first have chemo and then they would repeat their evaluation.  My chemo was Carboplatin/Taxol.  My CA-125 count has never been extremely high, like many I read about here.  So the higher the number doesn’t necessarily correlate to a worse condition.  I was terminal from the beginning, and without going through my records, I believe it was never over 200.  However, things are changing rapidly as far as CA125.  It has risen from 8 in December to 202 today.  My oncologist said not to place too great an emphasis on that as long as I am experiencing a good quality of life.  So we’ve agreed to just “watch it” for the time being.  I have a monthly consultation with him.  But I do have an area in my upper left chest area that seems to have a stinging sensation once in a while.  So he said, “Well let’s do another CT Scan just to check that out, so that’s on the agenda for some time in the next month.  And since I don’t know what it is, I am not going to spend every day diagnosing myself.  As I said before, that’s a joy killer for sure.     

The first chemo combo worked to bring down the number and size of the tumors to a place where I could undergo Cytoreductive Surgery aka CRS.  (July 1, 2013)  Some mention debulking, but don’t always have the same organs removed.  As for me, I had my uterus removed at age 36, but my ovaries and fallopian tubes were still intact. So my surgery involved removal of the ovaries, fallopian tubes, spleen, gallbladder, omentum and a portion of my intestines.  At age 12, I had an appendectomy. If I did still have an appendix, it would have been removed as well.  On a different note, I’m not too sure about the word “debulking” as in less bulk, as one might think.  I have a lot of “left-over bulk” which is scar tissue.  My abdomen feels very heavy, and my naval isn’t where it once was!  Now anyone who has had this CRS knows that the incision starts between the breasts and ends at the pubic area.  A “piece of cake” it is NOT! 

 While I don’t know what caused my particular diagnosis, I do know something as simple as having one’s appendix to burst can set up a cancerous spread resulting in the same diagnosis that I had…Peritoneal Carcinomatosis.  While in Pittsburgh I met a young man with the same diagnosis.  He too had just had Cytoreductive Surgery because his appendix had burst.

 Now as to radiation, I had none of that at the first.  But a year later, I had 3 cancerous lesions ON the Caudate Lobe of my liver (NOT IN THE LIVER).  Sentara Norfolk General has a Cyberknife machine.  I was thrilled to be able to have targeted radiation to that Caudate lobe adjoining my Liver, and the lesions were totally eliminated.  Now since you have tumors IN your liver, I can’t tell you how that might be treated.  In Cytoreductive surgery, I was told that they removed ALL non-essential organs, and they did.  So if you have already had CRS and a hysterectomy, I cannot see how more surgery would be helpful anyway, and what type of surgery would that be?  I’m assuming you also had your ovaries and fallopian tubes removed. 

 Tania, since you say, “I want to be as aggressive as possible in hopes of getting into remission”, I’m assuming that you mean you hope to get to a point where the tumors are stable and not growing.  That’s the most I can hope for.  Frankly, I think of “remission” as having no evidence of disease (NED).  But since I am already a Stage IV patient, I am never going to get to a point of having “no cancer”, since by reason of Stage IV, the aim of the surgery and the chemo was to reduce the number and size of the tumors.  I have never had a scan that showed NO cancer, rather my subsequent scans since surgery have all shown residual tumors.  Sometimes they are interpreted as being stable, as in not having grown.  Other times, the scan will show some enlargement of existing tumors, yet not a rapid increase in the size, and no new ones.  I consider that a plus, even though it sounds dismal.  So I don’t hold out expectations of ever being cured, but rather hope to be able to have some enjoyable quality of life, in between treatments.  Now I’m just sharing with you my personal experience, not diagnosing yours.

 Having had no treatments with Lynparza, I can’t comment on that except to say that the purpose of Lynparza, according to their web site, is to result in tumor cell death.  But like all other drugs, it works for some and doesn’t work for others.  Also I see that it has some side effects.

 Quoting from their site, it says, “…In clinical studies the most common adverse reactions (Grades 1-4) in greater than or equal to 20% of patients included anemia (34%)_____nausea (75%)_____fatigue (including asthenia) (68%)____vomiting (43%)_____diarrhea (31%)_____dysgeusia (21%)_____dyspepsia (25%)_____headache (25%)_____decreased appetite (25%)_____nasopharyngitis/pharyngitis/URI (43%)_____cough (21%)_____ arthralgia/musculoskeletal pain (32%)_____myalgia (25%)_____back pain (25%)_____dermatitis/rash (25%) and abdominal pain/discomfort (47%).

 Common lab abnormalities (Grades 1-4) included anemia (90%) _____neutropenia (32%) _____thrombocytopenia (30%) _____lymphopenia (56%) _____mean corpuscular volume elevation (85%) and increase in creatinine (30%)…”

 I would quote the source, but I haven’t been able to post my entries when I include the exact web link which normally I have been able to do.  But this is actually Lynparza’s own website.

 And I need to write another letter to another lady about “the side effects” of AVASTIN, which in my personal opinion outweigh its usefulness.  But understand I am not a doctor.  So I just think you should do some thorough research on AVASTIN even though it has been approved for Breast Cancer patients in combination with other drugs. Then you will be able to make a more informed opinion about this particular chemo regimen.  In the “drugs.com” site, it states – “For the Consumer - Applies to bevacizumab: intravenous solution.  In addition to its needed effects, some unwanted effects may be caused by bevacizumab (the active ingredient contained in Avastin). In the event that any of these side effects do occur, they may require medical attention.  If any of the following side effects occur while taking bevacizumab, check with your doctor or nurse immediately: It then goes on to list 95 side effects from common, less common, to rare.  And then a portion for physicians reads like this:  Gastrointestinal

 Very common (10% or more) _____Abdominal pain (up to 61%) _____vomiting (up to 52%) _____anorexia (up to 43%) _____constipation (up to 40%) _____diarrhea (up to 34%) _____stomatitis (up to 32%) _____dyspepsia (up to 24%) _____gastrointestinal hemorrhage (up to 24%) _____flatulence (up to 19%)
Common (1% to 10%): Dry mouth, colitis, constipation, nausea
Very rare (less than 0.01%): TE fistula, upper aerodigestive tract hemorrhage
Frequency not reported: Intestinal obstruction, intestinal necrosis, mesenteric venous occlusion, ileus, anastomotic ulceration, gastrointestinal perforation and wound dehiscence (complicated by intra-abdominal abscesses), tracheoesophageal fistulae…”

 So you can see why I’m not going to risk all these side effects for minimal results.   So much so that I told my doctor I would not take it. 

 In researching Avastin, I have an article dated in November of 2014, hailing AVASTIN as the first new treatment in 15 years for certain types of Ovarian Cancer.  (FDA approval for AVASTIN.)

 But then I have another report dated in March of 2015 that reads: “Mixed Results for Avastin Plus Chemo in Ovarian Cancer - Regimen improves survival but study misses cutoff for statistical significance.”  “…The findings and discussion revolved around the Gynecologic Oncology Group (GOG) 213 study, a randomized, phase III trial involving patients with platinum-sensitive recurrent ovarian cancer (defined as complete response to platinum-based first-line chemotherapy and PFS of at least 6 months). The trial had two objectives: evaluate the potential benefits of secondary cytoreductive surgery following recurrence and compare standard chemotherapy along or in combination with bevacizumab…

 Adverse events occurred more frequently with bevacizumab, including grade 3-plus thromboembolism (4% versus 1%), infection (13% versus 6%), hypertension (12% versus 1%), and proteinuria (8% versus 0%). Gastrointestinal perforation, fistula, or abscess (all grades) also occurred more often in the bevacizumab arm (15% versus 4%).

 In general, a quality-of-life assessment showed no deterioration of life quality in patients randomized to bevacizumab. Adverse events of special interest occurred with similar frequency in the two arms: allergy/hypersensitivity reaction (27% with bevacizumab, 25% without), all-cause mortality (2.4% versus 0.6%), and deaths possibly related to study treatment (2% overall).

 The GOG213 trial was supported by the National Cancer Institute…”

 Tania, as I read this report, the aim of it was to see if AVASTIN contributed to a longer PFS (Progression free survival).  They found that the prerequisite for this trial, among other aims, would be that AVASTIN would prove to provide at least 6 months additional progression free survival.  It did NOT.  In this study, it showed to be on average only 5 months longer.  And when I considered the possibilities of hemorrhage, I have ruled it out.  Personally, I will not risk all the possible side effects for 5 additional months of possible remission.  Now you asked for any “info, ideas and suggestions.”  What I have said just comes under the heading of “info”.  I have no suggestions for other treatments, since I can only attest to Carbo/Taxol regimens. 

 Please accept this letter in the spirit in which it is written.  I just want you to know that I’ve read your letter, and since I am a Stage IV Ovarian Cancer patient, I feel open to sharing some of my thoughts about drugs that are offered as “treatment regimens”.  I will say that the Lord has given me more years than I first imagined.  I’m still alive and I was first diagnosed in November of 2012.  So I’m happy with that.  I don’t know what the future holds, and in many respects, that’s a good thing.  If God had shown me my life’s journey when I was first born, I would, if possible, have wanted to crawl back in my mother’s womb and not face this cancer.  However, He knows the number of my days, and in Psalm 139 David says (paraphrased), “Lord where can I go that You’re not already there?  Nowhere!  He says, You saw me when I was being knit together in my mother’s womb, and in Your book all the days of my life were written, when as yet there were none of them.” I’m not forcing my beliefs on anyone else, rather only to share with you how I am able to cope with this terminal diagnosis and have peace of mind. Right now I’m enjoying a great quality of life, all things considered.

From that Psalm I take solace.  I’m not leaving this planet one day sooner, or later, than God intended for me personally.  None of us are guaranteed a set number of years.  Naturally though, when one is diagnosed with Cancer, they want to be cured, and live life with a new vigor.  That’s only natural. Yesterday is passed, and tomorrow hasn’t arrived yet, but I hope that both you and I will have many more tomorrows.  Especially for you, I hope that your years will be extended especially for the sake of your lovely young daughter.  As I write this, I am praying that you will find some treatment regimen that will give you a longer “PFS” progression free survival than you have now. You can’t afford to leave any stone unturned.  Perhaps Sloan Kettering will recommend a clinical trial.  (Now I wouldn’t want to be in one that offers a placebo and a real component though.)  So Tania, I’m sorry I don’t have some better reports to share.  I just wanted you to know that I for one “feel your pain”, and others here do as well.  The most I can do for you is show empathy and share some information about the drugs you are taking.  I will pray for God to guide you in all the decisions you must make.  And I agree with Susan.  It would be good to join that FB group and share your experiences there.    

 Praying for you & your little girl

 Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

 P.S.  Will try to post the reference here for the clinical trial I referenced earlier, and the side effects of AVASTIN as well.  Sometimes my letter will get through—sometimes it gets blocked. 

1.  http://www.medpagetoday.com/clinical-context/GynecologicCancers/56872
2.  http://www.drugs.com/avastin.html
3.  http://www.drugs.com/sfx/avastin-side-effects.html

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