An Intermission For An Update On The Realities Of Life With Cancer

I know I still owe everyone part 2 of the story of my diagnosis.  It is partially written.  Most of my posts take hours and hours to write, which means more like days and, of late, weeks.  Now that summer is in full swing and with the introduction of a car into our lives, I have less time for writing, sadly.  My life is filled with spending time with Josh and my children through frequent jaunts out of town during the weekends and doing little things with the girls (like taking them to camp and coloring with them and spelling words with Mia with magnetic letters).  Yes, they drive me nuts often when they won’t change their clothes or eat their meals, but at the end of the day, I love them beyond measure.  I’ve also rediscovered the joys of cooking again and make healthy, nutritious and yummy food that my children won’t eat.  To be fair, Mia does try things but my little Isabelle is as stubborn as her mother.  In a couple weeks, we’ll be going to Costa Rica for a friend’s wedding and then an extended vacation; it will be a fabulous experience for all of us (although I’m absolutely dreading the five-hour car rides between locales with my young children — they are city children and each time we get in our car, they both yell and scream about how they’re going to get carsick (which they don’t)).  Belle celebrated her third birthday on Saturday and I threw a very little birthday party for her that she and everyone else seemed to really enjoy.  All-in-all, Josh and I have found a new equilibrium that is working for us.  And sometimes, we even manage to forget that I have cancer and can truly live in the moment with a joyous abandon I’ve never known.  Sometimes…

Alas, the realities of cancer and that part of our life always resurface, and I and Josh have to deal with them.  So, this post (which won’t take me days and weeks to write) is an intermission in my story telling so that I can let everyone know about all that’s been going on.

I will start with the good news.  As I reported a few weeks ago, my PET scan in June came back clean (from which I draw some comfort but not a whole lot of comfort considering their imperfection in detecting pertioneal metastases, which is my area of concern).  I took the scans to my HIPEC surgeon to have him confirm the reading, which he did.  Because of the unreliability of the scans, I’ve always pushed for a diagnostic laparascopy at some point (where he’d go in with a camera through a little incision to take a look around).  The HIPEC surgeon, as well as my oncologist, have always been amenable to it.  He is in the process of starting a study to assess the effectiveness of diagnostic laparoscopies post HIPEC, and it looks like I will be a part of that study come October when I complete this current cycle of chemo, assuming there are no hiccups before then (like obvious new tumor growth or something like that, which would probably necessitate something more drastic than a diagnostic laparoscopy).  Josh being the wonderfully smart husband that he is immediately researched and found what he could about post-surgical diagnostic laparscopies but there really isn’t much out there.  I’m not really sure whether it’s tenable to have exploratory surgery like this as a routine part of monitoring.  Assuming nothing shows up on future scans, am I going to be opened up every year to see if there are new tumors in me?  Well, we’ll cross that bridge if and when we get there.

The other bit of good news — my CEA went down to 4.8 as of two Mondays ago.  I wasn’t supposed to be tested that day because I’d only been tested two weeks earlier — I’m on a monthly CEA testing schedule — but someone put it the order by mistake.  It dropped 2.1 points in the span of two weeks.  Josh and I were obviously happy about the news but we didn’t share it broadly.  0 to 5 is considered normal, but really anything that high in the range of normal is considered truly normal only for smokers.  So if I were a smoker, I might be happier, but I’m not so I’m glad the number is trending down but will be happier if it gets to 1 or less and stays there.  I’ve been in the 4 range before so I know how elusive a “normal” CEA can be.  It’s hard to say whether the CEA is going down because of the chemo killing cancer or the reduction in post-surgical inflammation.  The further away I get from the HIPEC surgery in March, the more accurate the CEA reading becomes.

Now on for the not so good news.  In truth, there really isn’t anything bad to report (yet).  The following updates are just part of the sobering realities of being in treatment and the consequences thereof.  So I will outline in my lawyerly fashion the individual issues from least annoying to outright stressful.  This might be a little TMI for those of you who don’t have cancer, but I write this for informational purposes for those who have my disease or who will be diagnosed with my disease.

Nausea — The nausea I have on folfiri is marginally worse than what I had on folfox.  It’s annoying, but I’m able to eat through it and it can be managed with the appropriate meds.

Elevated Blood Pressure — I restarted the Avastin on May 27 — we had to wait until my oepn wound from surgery had healed sufficiently as Avastin can cause bleeding and further delay wound healing.  Since then, I’ve seen an uptick in my blood pressure.  This happened while I was on folfox and eventually the elevated blood pressure had to be treated with a low dosage medication.  Avastin, really seemed to help in dropping my CEA dramatically while on folfox so elevated blood pressure that can be controlled with medication is an acceptable trade-off.  I haven’t gotten to that point yet this time around, but I expect to go back on the blood pressure medication before too long.

Bloody Snot — The Avastin also causes bloody snot and buggars.  Annoying and sometimes disconcerting to see the blood, but nothing so horrible.

Eyelid Twitching and Trouble Speaking — As I mentioned previously, about an hour into each infusion, my eyelids start to twitch like crazy and I sometimes have trouble enunciating because my tongue feels somewhat enlarged.  The first time it happened at treatment #2 on folfiri, I of course dutifully told my nurse.  This isn’t a typical reaction.  The oncologist wanted to stop the infusion at 80% completion.  I thought about it for five minutes and told them that I wanted to complete infusion because I didn’t feel like the reaction was life threatening.  Folfiri is my last real good proven treatment and I’m unwilling to compromise its application unless I feel like my life is in danger.  Of course, hospitals and doctors are always going to be worried about their liability and so they’ll stop treatment if they’re afraid.  I’ve found as the patient that you really do have to advocate for yourself because only you know your body and what is a true danger as opposed to a annoying but overall innocuous reaction.  This particular issue always resolves about an hour after infusion.

Fatigue — There is a noticeable increase in my fatigue levels with folfiri.  I suspect that’s due to the cumulative effects of all the chemo I’ve had, in addition to the after effects of the HIPEC surgery.  Whereas with folfox, I could go to the gym and cycle the day after infusion, I don’t feel so inclined these days, although I have been really picking up my workouts recently, especially during off-chemo weeks.  For the first time in months, my strength, meaning the strength reserved for the gym, is coming back.

Weight Gain — The steroids and probably the recent indulgences in ice cream — I have to eat all the ice cream my kids never finish after all — are making me gain weight.  It’s the kind of water weight that I find really annoying.  I am recommitting myself to the gym with the goal of returning as close as possible to my pre-cancer workout schedule.

Mouth Sores — The mouth sores are worse with folfiri.  I’m getting one about once every two weeks with them lasting for about a week.  I had maybe three minor mouth sores while on folfox.  They can be painful.  I will need to be better about using the mouth rinses recommended for addressing this issue.

Hives — The first occurrence of hives started two treatments ago, the Monday before the 4th of July, during an off-chemo week.  It was exactly a week after my previous infusion and I started itching Monday night.  At first, since the itching was on my scalp, I thought it was lice.  (I’ve had experience with lice and have taken my girls, myself, my husband and my nanny to a lice lady (one of the many orthodox Jewish women in New York City who specializes in finding and ridding you, your family and your home of lice with chopsticks or pencils in hand)).  [Side Note:  if you ever need advice on how to do this without using harsh frightening chemical shampoos and spending hundreds of dollars on a lice specialist, just ask me. The lice experience was quite the cultural adventure for us which maybe I will share another time.]  Anyhow, when I woke up in the middle of the night itching all over and felt raised bumps on my skin, I knew it was not lice (which oddly enough was a relief).  Then, I thought it was a food allergy (even though I never get food allergies).  I’d eaten a lot of sugar kiss melon that day and thought maybe I’d suddenly developed an allergy to sugar kiss melon.  When I was still itching 24 hours later, I decided to email my oncologist and internist because I was convinced it was a chemo side effect, even though it was happening an entire week after infusion and even though I was already five rounds into folfiri.  The oncologist told me to take Benadryl, which I did, and that seemed to really take care of the issue.  I did go to the dermatologist which was completely not helpful.  The hives broke out again after my 6th treatment of folfiri at exactly the same time during the two-week period, on a Monday night exactly a week after my previous infusion.  Now, I knew without a doubt it was a chemo side effect and this time it was marginally worse.  I took Claritin the next morning and then Benadryl that evening and it seemed to clear up quickly after that.  My oncologist is now, after the second occurrence, also convinced that it’s a chemo side effect, a very unusual one, but one nonetheless.  He doesn’t believe it to be life threatening.  Although I find it annoying to be so itchy and hot, I too don’t believe it’s life threatening (meaning that it isn’t accompanied by any shortness of breath or other respiratory issues).  But I will be monitoring myself closely.  Yesterday, as an added precaution, my oncologist gave me Benadryl which completely knocked me out, so I wasn’t able to watch my favorite cooking shows on the Food Network during infusion.  Bummer.

Hair Loss — Well, after holding on for so long through 12 rounds of folfox and a handful of rounds of folfiri, my hair is finally starting to weaken under the assault.  It is collateral damage in this war that I’m going to have to come to terms with.  I don’t expect I will have total hair loss, but I suspect there will be significant hair thinning.  At this point, Josh, I and others who see me daily notice it.  Soon, I’m afraid others will too.  I know hair is just hair, and everyone tells me that it will grow back and even thicker probably.  But I’m afraid that I will never be off treatment and that my hair will never have the opportunity to grow back.  I’ve always had thick straight hair and lots of it.  During pregnancy, I grew even more hair and after I stopped nursing, even as most women shed that pregnancy hair, mine never fell out.  Now, I can feel a single hair fall onto my arm throughout the day.  Other than looking fit, I’m the last person to care about looking good — I never do my nails, never put on makeup, never buy new clothes, etc.  But losing hair is really upsetting, even for those of us who care little about our appearance.  It’s a sign to the outside world that you are sick, that you are battling a life threatening disease, and to some degree it carries a certain shame and humiliation.  I should be used to having my weaknesses be obvious for everyone to see.  Nearly all my life, I’ve walked around with thick glasses and obvious nystagmus that makes it apparent that something is wrong with my vision.  I used to be really embarrassed and ashamed of my visual disability, but at some point I realized that my signs of weakness were actually a badge of honor and pride, a symbol of what I’ve had to endure and what I do endure, a testament to my strength.  I try to tell myself the same thing about my hair loss.  I don’t think I’m convinced yet.

Blood With Bowel Movements — Two Thursdays ago after my 6th treatment of folfiri, I had blood with a bowel movement.  It was the first time I had blood during folfiri — I think I had a minor incident or two during folfox but nothing alarming.  This time I was more concerned because there was a lot of blood.  My mind started racing, for I was convinced that I had a recurrence in my colon and that there was another tumor in my colon bleeding out.  When it happened again on Saturday night (and worse that time), I emailed my oncologist and internist again the next day — they must be so sick of hearing from me — and the oncologist asked if the blood was separate from the stool.   If separate and bright red, then the bleeding was likely superficial (i.e. hemroids).  It was both those things.  He told me to come in the next day anyhow.  We were away that weekend.  I went into the pool after sending the email and after that the bleeding stopped.  Go figure.  I went in as instructed.  My blood was drawn.  My hemoglobin was in fact higher than what it had been before my last treatment, which was surprising in a good way.  Usually, chemo wreaks havoc on your blood counts (especially only a week after treatment), and my hemoglobin is usually not so high, even two weeks after treatment.  A healthy hemoglobin was a good indicator that I didn’t have a tumor in my colon bleeding out.

[Side Note about nutrition:  I was mystified as to why my hemoglobin was so high however, and I’m convinced that it was because I’d been eating meat that weekend, veal and chicken to be precise.  Initially, when I was first diagnosed, I wanted to try a plant based diet and then I decided to be mostly vegetarian as part of an attempt to prevent the cancer from growing, but I’ve changed my mind.  I study my blood work all the time and I’m convinced that while you’re in treatment or preparing or recovering from surgery, you need to eat meat and other meat products.  You need the nutrients to heal.  I’m not saying eat a lot of it but eat it in moderation.  I do avoid processed meat.  I try to always eat organic poultry and grass-fed beef now and rarely eat the latter.  This and other attempts to boost my white blood counts through nutrition have proven to me that eating a well-rounded diet that includes meat is critical.  Through 20 rounds of chemo, I have yet to receive a shot to boost my blood counts, which many I know have received with far less chemo. (Knock on wood!)  Incidentally, I’m also not an espouser of the ridiculous notion that sugar causes cancer.  The biomechanics of cancer cells are way too complicated to be controlled simply through abstaining from sugar.  In the absence of sugar, cancer cells would find something else for fuel, like protein.  As someone who had gestational diabetes during both pregnancies, I’m very educated about sugar and the harm it can cause.  I try to be moderate in my processed sugar intake, which is just part of a healthy diet.]

I and the nurse practitioner spent a good while talking about what kind of stool should be concerning (because in the days since this had all started I of course had been studying my stool very carefully and was certain I saw tinges of red in the stool itself).  Black stool, she said is what is concerning — blood when it’s not fresh anymore darkens and if you have a tumor somewhere in your colon or rectum, chances are the blood would turn the stool very dark in color, black it seems.  I had no idea.  The truth is that folfiri has me alternating between constipation and diarrhea and that whole area down there is raw and not happy.  This would account for the bleeding.  While no one thinks I have a tumor in my colon, I was advised to go see a gastrointerologist.  I refused to go back to the gastrointerologist I saw last summer who failed to diagnose me.  I don’t blame him; he just didn’t have enough time.  Nonetheless, it would just bring back bad memories.  Instead, I went to see a gastrointerologist who my oncologist recommends, who is a true expert in colonoscopies and similar procedures.  Once you’ve had colon cancer, you really want a GI who won’t miss anything, not even that little polyp hiding in a bend somewhere.  A person with colon cancer should have a colonoscopy annually.  I’m due for one.  At first, we had planned on waiting until this cycle of chemo was over in October (to reduce the risk of bleeding), but in light of the bleeding I’m having and the need for some peace of mind, everyone agrees that it’s okay to do one now, even if it means holding the Avastin.  The colonoscopy through which I was diagnosed last July was performed by a GI in a shitty hospital under less than ideal circumstances so I’m worried that he may have missed polyps or other growth.  It isn’t unusual to have problematic growth in different areas of the colon (although if the problematic areas are of the same tumor biology, then the chemo should be killing anything that was missed in the first colonoscopy and any new growth since then, and no, the scans I’ve had wouldn’t have necessarily picked up an issue in my colon; a colonoscopy is the only way by which colon cancer can be diagnosed).  For all those reasons, I went to see my new GI, Dr. K., this morning with the intent of scheduling a colonoscopy.  She is a lovely lady who appears very competent.  She also listened to my blubbering, hugged me and even shared a few tears with me because I totally lost it in front of her, what with everything that is going on.  I mean if it were just one or two of these issues, that would be okay, but the combination gets to be a little much sometimes, and you haven’t even read about my final and most stressful issue which I’m going to tell you about next.  My colonoscopy is scheduled for next Thursday afternoon.  I will try not to think about it until I have to start cleaning out my bowels on Wednesday afternoon

Damn Insurance Company — I received a notice last week that my insurance company will not cover the Avastin I’ve gotten post HIPEC surgery on the grounds that it is a third line of treatment and has not been proven to be medically effective.  The medical consultant who made the decision for the insurance company is a doctor of emergency medicine.  It’s like my internist making a decision about the appropriateness of Avastin.  Completely absurd!  We, as in my oncologist and others at NYU, believe that the idiot doctor of emergency medicine may have considered HIPEC a second line of treatment and now I’m on the third line of treatment with Avastin being given again; why indeed if it didn’t seem to have worked the first time with folfox since I then needed to have HIPEC and more chemo afterwards.  Avastin is in fact most definitely a first line treatment and very proven to be medically effective.  I forwarded the notice to my oncologist’s office immediately in the hope that NYU had processes in place to deal with such matters.  And of course they do.  During infusion yesterday, as I was trying to fight off the effects of the Benadryl, I spoke to the financial counselors and signed some papers.  NYU will represent me in the appeal process before the insurance company.  My oncologist will fight on my behalf, with the weight of all the studies to back him. The financial counselor also wanted me to apply for an assistance program offered by Genentech, the pharmaceutical company that manufactures Avastin.  I won’t qualify for financial assistance but they will assist NYU in fighting the insurance company with their own data.  Because we knew the insurance company’s position on Avastin, I was no longer financially cleared to receive it yesterday, unless I paid for it myself.  NYU charges the insurance company $38,000 for each infusion of Avastin only (never mind all the other drugs I get at each infusion).  I doubt the insurance company actually pays that amount and instead pays a lesser amount agreed to by private contract.  Such a ludicrous game they all play…  Anyhow, NYU offers a very generous discount — I’m being sarcastic — for patients who pay out of pocket, reducing the amount I would be charged to $10,000.  Josh was prepared to drop the 10 grand right then and there; he said he would be willing to go bankrupt to save my life.  Such a wonderful husband I have, indeed.  I’m not so sure I’m willing to go bankrupt.  I called my oncologist on his cell phone from my infusion chair and asked him if he thought I needed the Avastin then and there.  He said missing one infusion would not make a difference and that he would fight the insurance company so that hopefully this is all resolved by the time of my next treatment in two weeks.  If not, I could drop the 10 grand then.  So I didn’t have Avastin yesterday (which probably worked out for the best since I just scheduled my colonoscopy for next Thursday).  I’m not so optimistic that all of this will be resolved in two weeks.  The notice indicated a 30-day response time after receiving our letter of appeal.  So, I’m preparing to spend $10,000 in two weeks and maybe again two weeks after that.  If it goes on much beyond that, I’m going to get really really stressed.  If we win the appeal, then we’ll be reimbursed, but I’ve no idea when that will be.  Money matters are very stressful, even when you are in a somewhat financially secure position.

Last night, Josh researched the possible harm of missing one infusion of Avastin.  I don’t think he found anything helpful.  This morning, he said he wants to consult with my HIPEC surgeon for a second opinion; I told him to feel free.  I was more concerned about my hair loss and how I am going to emotionally cope.  We each obsess about one thing at a time because if we obsessed and worried about everything all at once, it would drive us mad.  So hopefully, by having unloaded all my problems in this post, I can return from the intermission, forget about the realities of life with cancer and have some peace for a little while, until the next thing pops up that is.

P.S.  I shared this article on my Facebook page this morning.and wanted to share it here for those of you not connected to me on Facebook.  I never share articles about cancer, but I thought this one had good advice for friends of people with cancer and their families.  Read it if you have a moment for my and Josh’s sake.  Thanks as always for your support.

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8 Comments (+add yours?)

  1. erika hanson brown
    Jul 22, 2014 @ 17:58:36

    Miss Julie;;;;
    May you live, laugh, and love with ‘JOYOUS ABANDONMENT”!!
    Lots of love,
    And Birthday hug to Isabelle!
    erika

    Reply

  2. Jeanine
    Jul 22, 2014 @ 18:41:47

    Keep on – keeping on, Julie! Keeping you in my prayers. Enjoy your summer ♡

    Reply

  3. The Astonishing FartMan
    Jul 23, 2014 @ 01:33:41

    You’ve got a lot going on.

    I used to say that cancer is kinda like a really crappy part time job that turns out to be full time job, except they pay you only for part time and you don’t even qualify for minimum wage.

    Before I forget, the mouth rinse that worked best for me was Rincinol made by Gumbrand. (Who was the hick who thought up that name? But it works!) Better than Biotene for me. Taste’s like licorice, but is totally inert so you can dose yourself with it as much as you want. It’s a little pricey for a tiny bottle, but you can use much less than the recommended one ounce per treatment. It used to be available at some CVS pharmacies. Here’s a link:

    http://www.gumbrand.com/gum-rincinol-mouth-rinse-1770r.html

    Insurance companies can really suck, almost as bad as cancer, if that seems possible. It makes me so unbelievably angry that they toy with people who have cancer when you already have enough to deal with.

    Do they know you’re a lawyer? I had one little run in with my health insurer (about them paying for me to have levoleucovorin as a substitute for leucovorin in my Folfox cocktail when leucovorin was unavailable due to manufacturing shortages), and they turned really nice when they found out I was a lawyer. Of course, you don’t wanna be too bitchy with them (even if they deserve it) because then they tend to dig in their heels, but if you do your research and let them know that because your life hangs in the balance, you will have no choice but to instruct the executor of your estate, who’s a lawyer at your high-powered law firm, to sue them for about ten million dollars so your two baby girls will have something to live on after you’ve croaked due to being unable to get Avastin, that might wake them up. It’s just so unfair that you have to deal with such things when you need all your time for doing other important activities, such as cooking for children who won’t eat your food and making Kleenex tortellini stuffed with blood-boogers. (Tell the girls if they don’t eat your cooking, next time you’re serving them the Kleenex tortellini.) Probably it’s best to let the doctors and clinic handle the insurance company, and see where they get with it. Sometimes it’s just a matter of making the insurance company know you won’t accept the first, second, or third “No.”

    I was on and off and on and off Avastin a couple of times because I had a big surgery before my chemo and then another big surgery in the middle of my 12 cycles of chemo. Then I got a clot in my upper arm–probably caused by a bad IV in conspiracy with the Avastin, so at that point I told my onc to take me off the Avastin altogether after receiving a total of only about 4 or 5 doses. Avastin probably does help at the margins (so they say!), but the main bang for the buck in CRC chemo is the 5FU (fluoroucil), The rest–the Avastin, the oxaly, and whatever else they put in the combo–is mostly just nuts and cherries. (How ’bout that totally mixed metaphor!) It’s hard to know how the trade-offs for Avastin tally up, so maybe it’s best to leave it in the hands of the cosmos and not to worry about it too much if you get it or you don’t get it. After the surgery for my last recurrence in 2012, they offered me more chemo, but I turned it down. Decided it wasn’t worth the trouble it would cause. That’s a personal decision. Not easy. But I mention it so you’ll have one example of someone who figures it’s okay guiltlessly to say No Thank You to certain treatments that are relatively marginal already. I wish I had said No Thank You to Oxaliplatin, so I wouldn’t have chemo induced peripheral neuropathy right now. But that’s all very easy for me to say today, because here I am, NED. If I get sick again, maybe I’ll be saying, “I shudda done that chemo back in 2012.”

    Cancer and chemo is all a bit of a crap shoot (with the emphasis on “crap”).

    I do wonder if the Avastin might be contributing to your bowel bleeding? I think it tends to make all the body’s internal linings tend to bleed more easily.

    Yes, I do remember the bloody snot–pretty disconcerting. Avastin gave me high blood pressure, too, which I had never had before, but which is now a chronic condition, thank you very much.Mr. Avastin.

    Speaking of which, my body changed on chemo. I went backwards through puberty, then went through premature “manopause,” which is the male version of menopause, grew some adorable “moobs” (AKA man boobs), while certain other parts shrank noticeably, and I gained fifty pounds. I still have the weight and the moobs. And did I already mention the permanent chronic chemo induced peripheral neuropathy? Of all the chemo side-effects, the CIPN has been the worst, because it still bothers me every minute of every day and will not ever go away. Thank you very much, Mr. Oxaliplatin.

    Whizz! Moan! Whine! Whizz! Moan! Whine!

    Honest, I didn’t intend to post a comment full of bitching. Sorry.

    It’s like I’m now living in someone else’s body. Fortunately, that body is still kicking, so I better not whine too much. (BTW: I got clean scans and good blood work last week. Whoopie!) Yes, I’m happy to be alive, but that still doesn’t prevent life from sucking. I gotta learn to be more grateful for being given the opportunity to live a full life of misery. (Just kidding!)

    Whizz! Moan! Whine! Whizz! Moan! Whine!

    I’m not supposed to be offering “cancer advice” because to do so violates my prime directive and especially because cancer-advice-giving is probably better left to the cheerier types of sick people, but seeing as how that noble resolution is already blown all to heck, I’ll just add, “Please, please, try to get proper rest.” Exercise and rest, in the right proportions–not because it will affect your cancer one way or the other, but because it will affect the way you feel every day. Of course, advising a mother on chemo to let herself get tired out is like telling a pope on a balcony not to wear a funny hat.

    Well, I’ve run out of parentheses, mixed metaphors, and silly (mildly offensive) jokes, so will sign off for now.

    Happy Travels!

    Reply

    • julielyyip
      Jul 23, 2014 @ 09:53:50

      Astonishing FartMan, I really enjoy your comments. Keep them coming! Congrats on your clean scans and blood work. You give me hope. I will quibble you about the powerhorse in these treatments. You say it’s 5-FU. I disagree. Back in the day when 5-FU was the only option for CRC, survival rates were much lower than what they became with the introduction of the oxaliplatin and irinotecan. I think those latter two are the real drivers of the effectiveness of chemo. 5-FU with Avastin alone did nothing for me. That combo is considered maintenance chemo (the effectiveness is up for debate for maintenance purposes).

      Reply

  4. Elizabeth Medinilla
    Jul 23, 2014 @ 12:17:15

    Julie,
    Praying & wishing you the best. Hope you have great trip in Costa Rica.
    Regarding the insurance problems, most carriers will assign RN case managers to patients with major diseases. The case manager can help to advocate the necessity of Avastin & assist with claim issues.
    Take care,
    Elizabeth

    Reply

  5. Jodi
    Jul 24, 2014 @ 13:07:09

    Hi Julie. I also was having difficulty in getting my Avastin between my insurance and the pharmacy. I was able to get a co-pay assistance card to help with the cost. Hopefully this is a viable option that can help you get this medication! Its under Gene tech online application. Good luck!!!

    Reply

  6. Rachel
    Jul 25, 2014 @ 15:18:04

    Hi Julie, this is Rachel (Esther’s friend). I was thinking about you because I remembered Isabelle and Jonah’s birthdays are close together. Happy birthday to Isabelle – I can’t believe they’re both three! Glad you guys are getting away this summer. You and your family are and will be in my thoughts and prayers.

    Reply

  7. Kispangit
    Sep 09, 2016 @ 04:16:18

    $38k per infusion!? Jesus H. Christ! Just made a quick calculation: that’s 46 months of my net income…2 months short of 4 years! Insane! Drug companies are exploiting human despair beyond comprehension.

    Reply

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