Category Archives: Chemotherapy

Ugh, Hair Loss

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Chemotherapy for ovarian cancer usually means hair loss.  I got off very easy in that regard during my initial treatment 2 years ago.  Now? Not so much.  I have hair coming out in clumps and am nearly bald at this point.  Thank goodness I have some wigs and know how to knit and crochet!

DH is taking it a bit harder.  I think it brings home that the cancer is something we have to deal with.  I dunno, I think I won’t look half bad bald.  I just need to lose about 40 lbs.

My CBCs were good on my blood test yesterday, so I only have to have the appointment with my doctor / nurse practitioner (whomever we see), before the April 3rd  chemotherapy.

Action Plan for Ovarian Cancer Recurrence – Finally

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Finally have a plan of action. My gyn/onc NP agreed with the idea that the psychological harm of the wait for symptoms – yes, ascites (!!!!) – was too great on most patients.

My blood pressure is normally 120/70 or less. My blood pressure after the consult with the generalist oncologist was 145/80. That is not conducive to overall good health despite the cancer!

I realize intellectually that chasing the CA-125 is not really what the research sees as necessary, but it is something my gut tells me is the right thing to do before ascites comes to visit.

I’m getting a port in the next week, and then starting chemo on March 5. I may even get away with as little as 2 chemos. I’ll probably still have to keep the port for some time.

I’m also doing a bunch of crochet / knitting to prep. I think there are gonna be a lot of fish dishcloths in my future.

NED Left the Dance Floor

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2 plus years out from OvCa diagnosis…

This is not the blog post I was expecting to write.

I didn’t expect to get a CA125 of 115 on January 31st..

I didn’t expect to get a CA125 of 304 on February 14th.

The MRI shows nothing –  except a small renal cyst.  No further information in the report.  This worries me due to some studies DH and I have run across.  It makes me wonder if the mets are hitting my kidney.  Or is just a benign cyst that has nothing to do with anything?

The oncologist didn’t even note that in our consult.  Rather, Dr. Professor presented me with all the information about how asymptomatic patients don’t really benefit from chemo any more than those who wait for symptoms to present.  We are talking about the cancer that whispers.  What is symptomatic?  Upset stomach? Twinges of pain?  Weight gain? Weight loss? Frequent urination?  How can you know for certain you are asymptomatic?

Honestly, I think he was firing me as a patient. Something I don’t think DH caught on to. I think this is an area that is too far out of his expertise. He said as much.  He muttered something about mis-staging at the original surgery.  The thing is, according to a new group of studies every single ovarian cancer ever has been staged incorrectly. They think it really starts in the Fallopian Tubes somehow.  I’m not clear on the how. 

Of course, I’m allergic to all those corn-based things used in PET scans.  This is the scan that can see microscopic disease.

I have an appointment with the Nurse Practitioner at the Gyn/Onc, Dr. Sunshine.  She seemed to agree with our assessment that if CA125 nearly tripled, chemo might be a good idea even if there are no obvious symptoms yet.  (She works hand in glove with Dr. Sunshine.)

In the back of my mind I keep hearing the statement that Dr. Sunshine said about the tumor he found during surgery: “Fastest growing in 25 years of practice…”  In a matter of 3 months I had no cysts to a cancerous cyst. In a matter of a little over a week I had ascites.  Do I really want to wait for obvious symptoms?

Early symptoms are so very subtle, so easily mistaken for just the part of life.

No, this isn’t what I was anticipating thinking about now.  It wasn’t what I thought I would be blogging about in this year.

Now, I am writing about NED leaving the dance floor.

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More Insurance Woes

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Insurance companies were created to make our lives miserable.  This is something of which I am convinced.

I should amend that statement.  For-profit insurance companies were created to make regular folks miserable.

What has made me say this now?  DH decided to appeal a denial of 500 USD.  The first paperwork we saw had only one incident that came under the denial.  He appealed.  The denial came back with three incidences of something different than what we appealed originally.

What is being denied?  Something that had been previously covered when submitted.  The insurance company in question is notorious for this sort of behavior.  While I understood why DH wanted to appeal, I felt that eating the 500 USD would be the wiser course of action due to the insurance company’s reputation.  (He, rightly, felt they should fulfill their contract.  Me?  I’ve dealt with this sort of absurdity with my allergy situation since I was 18, I knew they would go back and find further stuff to deny.  500 USD was, in my mind, a pittance to what it could have been.  Perhaps I have already been defeated by the insurance monster?)

So, I now have a very irritated husband who is dealing with the insurer and his workplace representatives while he is debating (with himself) whether going further with this appeal may lead to them denying even more. 

As a note, yes, I am behind in my postings.  Everyone I know decided to be born in July or August.  As soon as I attend one birthday, I have another to deal with.  And none of the birthday people involved are able to answer the question, “What do you want for your birthday?”  They all hem and haw – but will be disappointed if they don’t get something that they actually want! 

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Port-Free and In Remission

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Monday, June 14, 2010 I got my port out. The gynecological oncologist and the hematologist / oncologist said ok! I made the appointment to remove it fast.

Removing a port is an in-office procedure. They give you a numbing agent, make a cut, and pull it out (with care). Then they stitch you up. I had a rather common reaction while they were pulling the port out – I almost fainted. I got to sit still for 10 minutes or so afterwords to make sure I didn’t pass out walking out.

I guess the screams of pain when they gave me the local had already scared too many waiting patients. I have really sensitive skin.

I bet some of you are wondering what my CA-125 was? It was a completely normal and remission fulfilling 10!

Of course, my pekinese is irritated at me for not picking him up while that wound heals.

Now the irritating news.

It seems I have a rather common tongue fungal infection that the periodontist found. He sees it in cancer survivors all the time. I have one problem. Even though Majic Mouthrinse is compounded the suspension solution used uses benzyl alcohol (allergic) and two corn derivatives: sorbitol and glycerin. I tried to tell the periodontist this while I was there, but he said it was compounded. Now I have to figure out what to do to treat this problem.

Post-Chemo Gynecological Surgeon Follow-up

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We saw Dr. Sunshine Thursday, November 5. At said appointment I found out what my post-chemotherapy plan is going to be. First, I will be on the pain patch for at least another three months – until my next appointment with Dr. Sunshine. The most disappointing part? I have to keep the port until April 2010. This means having Lovenox belly. I even admitted that there are days I can’t find anyplace to inject the stuff. Dr. Sunshine told me I’m not the first, nor will I be the last, to have that issue.

For the first year I get to see Dr. Sunshine every three months for blood tests and a physical check of my abdomen and neck. Year two will be physical exams every 4 months; year three, every 5 months, and so on. The blood test will probably be taken at Dr. Professor’s office whenever I get my port flushed – while I still have it. Every six months I get to have a CT scan. The problem? There is no contrast dye that I can safely use.

No contrast dye makes making that appointment a bit of a chore. I have to repeat the thing about no contrast dye many, many times. For instance, when I called to make my appointment for my first CT scan post-chemo I had to tell the woman 4 times that there was no contrast dye involved. I’m pretty sure that they have a script and I just don’t fit those scripts.

DH then asked about the hot flashes. Due to my thrombophilias I can’t use hormone replacement therapy safely. I was given a prescription for effexor. It seems that there has been a great deal of success in treatment of hot flashes with it. My problem with it? I don’t like the list of side effects. I don’t really consider the hot flashes that bad unless I’m actively having them. I will say that the last week or so they seem to be being more frequent, but that could just be my imagination.

Part of my plan for post-chemotherapy is to restart Weight Watchers and get more exercise – including weights. The last time I tried to start that I found out I had ovarian cancer. Hopefully, it will go better this time.

Last Chemo CBC With Follow-Up Plan Meeting

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Today, Thursday, October 15, 2009 was the last time I had to have a full CBC related to my 6 chemotherapy sessions for ovarian cancer. (I’ve put an Excel graph showing the progress from before session one to today.)

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I have heard tell that many patients feel a bit lost about no longer coming in for chemotherapy and bloodwork every week. Honestly, I don’t feel lost, only concerned that I will lose track of when I’m supposed to go to the doctor since I still haven’t found a decent job. (Michigan’s economy really sucks.)

Anyway, things aren’t exactly over – which is why, much to everyone’s confusion, DH and I aren’t ready to celebrate it “being over.” First, I have a consult with Dr. Sunshine, the gynecological oncologist. He has to review my case and approve any and all follow-up. The first bit of follow-up includes getting both another CA-125 and CT scan at least 3 to 4 weeks after my last chemotherapy session.

After the first CA-125 and CT scan come back “normal” (as DH and I are sure they will), I get to make an appointment to take out the port. This, both DH and I are very eager to make happen. With the two thrombophilias I have, I must continue taking Lovenox (and bruising my belly) until it comes out – and maybe for a little while after it comes out. For those unfamiliar with Lovenox, it is a blood thinner with fewer ill effects and dietary restrictions than other blood thinners. Hematologists love it. The problem with Lovenox? No matter how careful you are, you will bruise. I never bruised from the variety of fertility medications I injected, so it is not my injection technique!

Once the port comes out, the next step is to plan for a CA-125 and CT Scan every 3 months for the next year. The second year is every 6 months, and so on. Personally, I’m pretty confident the cancer isn’t coming back for a very long time – if family medical history is any indicator.

Somewhere in the midst of all this I have to figure out how to get off the now necessary, but not always necessary, pain killers I am taking for the adhesions that are growing in my belly. It was adhesion city down there before they went in, there is no reason to believe that new adhesions aren’t forming – especially with the nasty pelvic pain that comes if I forget to take my medication. (Yes, I have left that patch on for 4 days and wondered why there was breakthrough pain. This is why I am mostly worried about losing track of “when.”)

So, plan in hand, my next step is to see Dr. Sunshine and review the plan Ms. Clarity outlined. I was really hoping to be rid of the port sooner rather than later, but will keep it in until I get those clean reports back.

Yes, I’m Weird (Medically Speaking)

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It has been independently confirmed that it is not my imagination. I’m just weird.

Most ovarian cancer patients aren’t diagnosed until Stage 3 or 4.

I just happened to be opened up in time for it to be Stage 1C – but the tumor was so fast a week later may have been stage 4. (Highly unusual.)

Normal chemotherapy patients do not crave tacos and hot sauce.

I do. Independent cancer practitioners have advised other patients that my diet would not be conducive to the health of other patients. Isn’t hot sauce a part of the basic food groups?

Normal cancer patients are freaked out by cancer.

I’m more freaked out about walking into an office where popcorn is being popped. I can’t help it. Cancer is sooo predictable compared to allergy. And, people get cancer. They don’t get allergy or infertility.

Normal cancer patients get rejection and denied letters from their insurance.

I get “finalized” letters for 0.00 USD from my insurance companies that lay unattended for at least a month. No one has ever even seen such a thing before.

So, “I iz a speshul snowflake!” (Blech, yuck.)

Final Chemo That Almost Wasn’t

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Insurance. My oncologist called at 2:15 the Tuesday before my last chemotherapy telling us that the insurance hadn’t paid for anything even though the insurance company was saying we were covered.

The oncologist was ready to refer us to a cheaper center. (This made me mad. I dislike the assumption that I cannot afford something when there were many ways in which we could have worked this out with everyone getting paid properly. It is good DH was the one dealing with this. Funnily, both he and I came up with the exact same solutions if there had been more issues.) At this point, the options were, float the money (thousands) to the oncologist, go to the unknown center, or, delay chemo a week to see what the devil was going on.

DH was left alone to deal with this as I had just gone off to the chiropractor and to run some preparatory errands. He got on the phone to the customer service number to try and figure out what was going on. Each person he talked to told him that, yes, indeed, I have coverage. No one could answer what was going on. Well, that is, until he had been transferred 7 times. On the seventh transfer, he found someone who could look into it.

I walked in the door and was greeted by this. Of course, this was not enough of a distraction. DH has a friend who is having major medical difficulties, and the “Check This Person Clause” had been invoked over instant messenger. It seems that folks were very worried that the news that the working diagnosis (for a year) was no longer the working diagnosis. Somehow, between phone calls, DH had managed to go over there and check on him “without him knowing that we asked you to check on him.” (I don’t know why people don’t want others to know that they care about their friends. I think it is a guy thing.)

So, DH instructed me to create a login so we could see my claims. (Yet another misinterpretation of HIPAA causing undue problems. Even though it is DH’s policy, each person has to have a separate ID. No other policy I have ever had did this. It is stupid.) We were shocked to open several “finalized” claims to see that they had been finalized to $0.00 USD. Yes, zero amount had been the amount paid and finalized as if covered. The insurance company had, somehow caused my name to become disassociated with my policy.

I still showed up as being on the policy in most places seen by both the insurer and the medical professionals. I even had the coverage. But, somehow, claims were being put through at zero dollars. No one who was involved in this had ever seen anything like this fiasco before. As usual, I found something new to cause issues.

Now, lest anyone think it was easy to get this figured out. I had to have the doctor, his biller, DH, my case manager nurse, and DH (worth mentioning twice as he was on fire), haranguing these folks since I was scheduled for my final chemotherapy within 48 hours!

They are still sorting the mess they made out. This was 100% the fault of the insurance company. They even admitted it was 100% their fault. This was not the first mess up to happen due to their IT systems not being very well managed. I have had to inform other providers that they are redoing all the claims from August forward due to this mess!

As to the friend? He seems to be doing ok despite having his medical situation suddenly get more complicated again.

I will tell of the final chemotherapy at another time. I expect that DH may comment on this post since he has a better grasp of what happened than I do since, well, I had to take dexamethasone the next day and that just makes me nutty.

Note: Yes, the reviews are a bit wonky at the moment. I haven’t gotten a chance to fix them as I’m still recovering from the Final Chemo That Was.