Thrombocytopenia--a big word for a HUGE problem

Good Grief. 66,000! That is the number I was given by phone yesterday concerning my platelet counts.  This is the lowest my platelets have ever been. There is no drug that can be given to increase them--at least that is what my doctor said.

Human blood has several components—white blood cells, red blood cells and platelets all surrounded by plasma. Platelets are responsible for the clotting of blood which is crucial to our survival. Without them, I could die of excessive blood loss instead of cancer.

Platelet image from Bing

Platelet counts are considered normal when there are 150,000 to 400,000 of these saucer-shaped parts of our blood in one cubic millimeter.

Interesting fact:  Some platelets line our blood vessels. If platelets are low, that lining diminishes which allows some blood to seep into surrounding tissues. This can produce little red spots on the skin. Several months ago I asked my doctor about the red spots I have. She had no idea what they were. Thankfully, they were not skin metastases. That eliminated the worst possible cause at least. Perhaps, I have stumbled upon a possible cause--low platelets.

Almost three weeks ago before my last treatment on June 22, my platelet count was 78,000 in a cubic millimeter of blood. I was allowed to continue treatment with the same drug I have had for 1 year and 2 months, but only at a reduced dose.

In order to be treated again with TDM-1 (Kadcyla), my platelets need to be 75,000 or greater.

My next infusion is scheduled for this Monday. I will know more about what the plan will be for treatment by the end of today. (Friday, July 9, 2015) Hopefully, it will be to wait another week and hope for improvement. Or, treatment may have to change. That is my greatest fear.

Now, not only do I have to worry about my cancer progressing, I have to worry about my body not being able to handle the treatments. Oh, woe is me.

Interesting fact: TDM-1 ( Kadcyla) has a very long half-life which means it stays in your body a long time. That is good concerning the cancer cells, but when your platelets are suffering, it is not so good.  

My first treatment in May of 2013 included the drugs Taxotere, Perjeta and Herceptin. That was 2 years and 2 months ago. At that time my platelets were 208,000.  At one point my platelets increased to 317,000. By August, I began to see a trend that my platelet counts were decreasing with each treatment. A year later, I started TDM-1 (Kadcyla). Platelets at that time were 188,000. Another year later and they crashed at 77,000. There was a slight increase and then the count dropped to the present total of 66,000.

Not too long ago, I was told by my PA that platelet counts can fluctuate daily. The trend I am seeing is that my platelets do not fluctuate significantly enough to reach the normal range again any time soon.

Below is information that categorizes the degrees of severity in platelet numbers.

http://www.chemocare.com/chemotherapy/drug-info/kadcyla.aspx 

Normal Platelet Count
150,000 - 400,000 cells/mm3

Risk of Bleeding is based on the Platelet Count
100,000 - 149,000 cells/mm3
   
Little to no risk of bleeding
50,000 - 99,000 cells/mm3

Increased risk of bleeding with injury
20,000 - 49,000 cells/mm3

Risk of bleeding increased without injury
10,000 - 19,000 cells/mm3
   
Risk of bleeding greatly increased
Less than 10,000
Spontaneous bleeding likely

As of today, I have seen no bleeding. I have had a few bruises on my legs but nothing that has scared me. I believe my platelet count is in the grade 2 range. When it gets into the grade 3 range—below 50,000—there can be bleeding of the gums, nose and intestines. 

I am so thankful for the internet. It has given me far more information than I have received from the people I see for treatment. I was reminded via the internet that there are certain drugs that should not be taken with low platelets. Those are Ibuprofen, aspirin, or Aleeve. Those medications can interfere with the clotting ability of my platelets. My medicine cabinet holds some dangerous chemicals for someone like me. I learned I should stay away from rectal suppositories. Good thing I know this now for I almost bought some the other day because I have been experiencing some intestinal discomfort not related to diarrhea.

This condition threatening my current treatment is one I knew could happen, but one I did not expect. Stupid me. Anything is possible.

Up-date:  Doctor recommended attending scheduled appointment and having platelets checked at that time or having them checked locally next week. If platelets have risen, I can have treatment on Thursday. I decided to have blood work checked locally next week instead of driving two hours with the possibility of not being treated. Platelets need to be 75,000 or above for treatment to occur.

Up-date #2. Platelets checked. 64,000. Delay treatment.  Check platelet count in another few days.

And, the saga continues . . .

Keep your fingers crossed for me!

Eyebrow Tattooing and Eyelash Growing

On April 15th I had a second session of eyebrow tattooing. Just like the first time, it took around two hours to finish. It was as unpleasant as the first time. Those little razor blade cuts can hurt.

Here are my completed brows taken the day after the final session.

Just like the first time, on day 5 the itching began.  By day 11,via my magnifying mirror, I could see the ink escaping the tiny crevices made by the razor blade. Some of the lines of ink I was glad to see go, but some I was not.

As you can see by this picture of me without any make-up, and after some time had passed, my tattooed brows are lighter in color and thinner looking. Tattooed brows can take as long as two weeks to heal. This picture was taken after healing was complete.

During the day, while my eyebrows healed, I was able to control my desire to scratch, but as I slept it was a different story. One night, I awoke to find myself scratching my left brow. Today that area has a small space that is missing ink. Luckily it is only a small area, and thankfully eyebrow pencils are part of my make-up collection.

This picture shows my brows with some filling-in done with a brown eyebrow pencil.

My only regret is I wish the two eyebrows matched. One eyebrow has lines that are more or less diagonal. The other one has lines that start out diagonal, but then become more horizontal. Overall, I do not regret having this done. Although it has crossed my mind more than once that I may have been used by the tattooer to practice her skills since there was no charge to me for four hours of her time--but hey, no harm done.  

Several weeks ago I started applying Careprost to my top eye lashes. It is a product like Latisse, but not as expensive. My lashes are beginning to fill in, but it is a very slow process. It may take as long as 4 months for my eyelashes to reach their longest length. Careprost is easy to use and can even be used on eyebrows of which I have started to do. I am not seeing the same results as I am getting with my eyelashes, but I have not given up yet. If you decide this might be something you would like to try, whatever you do, don't buy it from someone who specializes in skin care. I was not very happy when I searched the internet and found the same 3 ml product for so much less than I paid for it.

If my lashes are ever long enough to be seen in a photograph, I will post some pictures. If those pictures are ever posted, you will know the product works.

Thanks for stopping by!

Update to this post on August 7, 2015:  It took me a while, but I finally researched the drug Careprost for eyelash growth. I am currently undecided if I should continue using this product. It appears to have the same ingredients as Latisse, but I cannot figure out why that is possible since the patent Latisse (company Alergan) has is not expired. Careprost is not FDA approved like Latisse. My eyelashes have reappeared but not as long and thick as I had hoped. Do not use on bottom eyelashes because, as I found out when I slept, the product irritated my eyes resulting in redness and burning.  Also, the person that sold me the product did not warn against the possibility of iris color changes as a side-effect. This may be an uncommon occurrence for use of this product to enhance eyelashes, but it still could happen.

Update December 1, 2015:  Shortly after my Aug. 7th update, I stopped using the generic brand of  Latisse. My upper lid itched and a few white bumps appeared which from my research could have been a bacterial infection. My eyelashes did start to fall out, but luckily many remained, and I still have them today. They are not the thick lashes I had in my youth--darn menopause. My tattoos of my eyebrows have lightened considerably. At this time, I have no desire to have them redone. I am disappointed that the tattoos did not last longer.  

Latisse has 11 patents with the last one expiring in 2019. Until then, the generic is not supposed to be sold in the US--at least that is how I understand the process.

Prescriptions for Latisse are required. A dermatologist or an eye doctor can write them.

Mammograms At Age 40 or 50?

Normal (left) versus cancerous (right) mammography image

Wikipedia http://en.wikipedia.org/wiki/Mammograpy

The topic of what age is best to begin screening mammograms has resurfaced--well, it really never went away. It has been around since the 70’s when research on the effectiveness of mammograms first began. It is a complicated issue entangled with other complicated issues.

I decided to write about this subject after I read a recent blog post by a former cancer patient, now cancer advocate.  Her post was written in response to an NPR (National Public Radio) article with the headline Congress May Be Forced to Intervene Again on Mammogram Recommendations. The blogger wrote of her disappointment in the NPR reporter leaving out some important facts. My interpretation of her viewpoint is that if Congress intervenes again it would be due to their failure to recognize the research and scientific evidence that screening mammograms starting at age 40 show more harm than benefit for woman of average risk for breast cancer.

The writer of the post gave several reasons women could be harmed by mammograms in the 40 to 49 age group. (You will find the reasons she cited plus a few others closer to the end of this post.) All have grown from clinical trial results and were interpreted by the United States Preventative Services Task Force (USPSTF). I found the reasons to be a weak attempt to persuade me that screenings should start at age 50 instead of 40 for women with no symptoms and no family history of breast cancer. I wondered if my emotional baggage from my own cancer diagnosis was tainting my ability to accept what the evidence was showing. So, I decided to do some research to see if I was missing something.

First, let me explain whose recommendation caused people to pay attention to this issue. It came from the United States Preventative Services Task Force (USPSTF). The Task Force is made up of a small group of doctors and others involved in public health. Their recommendations are considered by insurance  providers, health professionals, and now the Affordable Healthcare Act engaging in medically related decisions. According to Pubmed.gov http://www.ncbi.nlm.nih.gov/pubmed/1544091
an April 1992 report said the USPSTF “was established in 1984 by the US Department of Health and Human Services to develop recommendations on clinical preventive services based on evidence from published clinical research. Guidelines issued in 1989 addressed 169 preventive services in 60 topic areas.” 
 
Their recommendation in 1992 concerning mammograms was “ . . . the USPSTF recommendations on breast cancer screening, which call for annual clinical breast examinations”-- doctor’s physical exam—“after 40 years of age, mammography every 1 to 2 years beginning at 50 years of age, and early screening of women at increased risk for breast cancer.” Somewhere along this timeline, screening was changed to start at age 40. Now, the pendulum is swinging back to the recommendation similar to that of 1992.

Since the Affordable Health Care Act (Obamacare) became law, insurance providers must follow any mandates given by this law. These mandates are spawned from the recommendations by the USPSTF. One of the mandates is insurance providers must cover preventative services. Mammograms are considered one of these services-- I would argue mammograms are not preventative unless preventative means stopping early death, but that is not what I am discussing here.  The USPSTF makes recommendations for those preventative services. (For example, the age to begin screening for breast cancer.) Based on the most recent mandates by the Affordable Health Care Act, insurance providers are currently responsible for the entire cost associated with screening mammograms in asymptomatic women starting at age 40. The United States Congress is the only reason this mandate was established. 

In 2009, age 50 was the magic year to begin screenings. Congress, in an effort to please constituents--I am guessing--intervened by passing legislation telling insurance providers to ignore the Task Force’s recommendation. Health insurance providers were then made responsible for continuing to cover screening mammograms starting at age 40.

The latest draft recently released by the USPSTF  
(http://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementDraft/breast-cancer-screening1 ) basically stays the same as the 2009 recommendation. Both call for women to make a decision about a mammogram based on their particular circumstances; women should be informed about any benefits or harm done by the screenings; woman should understand that the benefits are small at 40 but increase as women age; the recommendations instruct doctors and insurance providers to begin screening mammograms at age 50. 

Because of the recent draft released by the USPSTF, the conversation concerning Congress intervening again has begun. Will they intervene? For political reasons, maybe; the USPSTF has kept the same “C” rating that caused such a stir in 2009. The “C” rating does not make it mandatory for insurance providers to follow the USPSTF guidelines to begin subsidizing screening for breast cancer at age 40—an A or B rating does. This doesn’t mean mammograms at 40 will not be covered; it means it is not mandated.

For a moment, let me take your thoughts in a different direction:
I think people being told by the media that decisions about their healthcare are between themselves and their doctor gives the false impression that they are in control. This is only true if the patient’s health insurance provider approves tests and or treatments requested, or that the patient has a lot of extra cash to pay for such services. For those people not able to pay out-of-pocket healthcare costs, the insurance provider is actually the one making decisions about which health related screenings and treatments they will cover, not the patient or the doctor. 

Now, back to the subject of this post.

What side are you on? The side wanting to keep mammograms starting at age 40 and paid for by health insurance providers because they DO find cancers possibly saving lives in that age group (even though the percentage actually found is low in some studies). Or, the side that says mammograms are not necessary for women in their 40’s due to: unchanged mortality rates, the density of breasts in this age group along with DCIS conditions causing over-diagnosis and over-treatment leading to unnecessary, surgeries, treatments and radiation as well as false positives causing unnecessary anxiety and biopsies resulting in billions of dollars spent.

One of the arguments that agitates me the most against screening mammograms starting at 40 concerns DCIS--Ductal Carcinoma In-Situ is cancer, or sometimes called pre-cancer, inside the milk-carrying ducts of the breast. Presently many people believe treating this condition leads to over-diagnosis and over-treatment. This confuses me because most breast cancers start in the ducts. DCIS is portrayed as a less dangerous cancerous condition rarely invading healthy tissue. I initially was diagnosed with DCIS—stage 0 disease that later became invasive and now metastatic. No one can convince me that this condition is not serious especially when science has not discovered which DCIS conditions will become invasive with the potential to kill. I have read the results of the research. My mind has not been changed despite mammograms not detecting my own cancer. I still think early mammograms are needed to diagnose DCIS and aggressive measures are needed once it is found. More sophisticated screening tools like digital mammography and MRI’s need to be used in this group—not just for women with symptoms. They are more accurate. Unfortunately, they are more expensive, so probably won’t be used in all routine exams any time soon.  Better diagnostic tools to find these conditions even earlier probably would increase the currently unchanged rate of mortality for the 40 year old age group. If it were you, would you care if you might have been over-treated but have no way of ever knowing because your cancer never recurred? 

As my research came to a close I reread this excerpt from the USPSTF draft.

“. . . screening mammography in women ages 40 to 49 years means that the USPSTF concluded that the benefit of screening mammography outweighs the harms in this age range, but only by a small amount. . . Women ages 40 to 49 years must weigh a very important but infrequent benefit (small reduction in breast cancer deaths) against a group of meaningful and much more common harms (overdiagnosis and overtreatment; unnecessary and sometimes invasive followup testing and psychological harms associated with false-positive tests; and false reassurance from false-negative tests). Women who value the possible benefit of screening mammography more than they value avoiding its harms can make an informed decision to begin screening.” 

http://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementDraft/breast-cancer-screening1

Did you catch that?--“benefit of mammography outweighs the harm”. How can that be? I had the impression from the blogger’s post that started my investigation that mammograms should begin at age 50 was due to harm being greater than the benefits. Then I read the excerpt above and realized the more harm rationale is not quite what the recommendation says.

There is only one reason that stands out to me as the most legitimate reason women may one day have to wait until age 50 to be screened—costs. Costs are not one of the Task Force’s considerations. The other 8 reasons seem like an exercise in obfuscation when the debate should be about the financial health of insurance providers. (I am not suggesting here that insurance companies are evil.  I personally could not begin to pay for my cancer treatment. Blue Cross Blue Shield has always been exceptional in their customer service and efforts in helping me get the care I need.) I can't help but feel that trying to convince people that early screening causes harm, although may be true to some degree, may not be the driving force behind the age change. It sounds better to the public than “well . . . we can’t spend the money on you because there are simply not enough of you that this helps.” It is a cost-benefit issue not a harm-benefit issue. Money does need to be spent where it does the most good for the most amount of people without crippling an insurance provider financially. Unfortunately, some of us will be on the losing end. 

This disease is complicated. There is no way to tell exactly which women would have lived cancer free lives if they had gone with a more conservative treatment approach after their diagnosis. Sure, politicians don’t want to seem like they hate women by not forcing insurance providers to pay for screenings. Providers don't want to give the appearance they are not interested in helping people and are more worried about profit. The reality is insurance companies providing financial assistance to their clients must spend money where the most people are helped. Money is a factor in all decisions, so is saving lives. Sadly, there is a limit to both.

Biopsies and surgeries do hurt and cause anxiety, but nothing compares to living with stage IV cancer. So even with the evidence that the benefit of mammograms in this age group is small, I still believe mammogram screenings should start sooner rather than later whenever possible. Your life could be the one depending on it.

As I said in the beginning:  This is a complicated issue.