Saturday, August 18, 2012

Breaking the silence

There are many things that we take for granted, don't miss until we don't have them anymore.  For me lately, this has been stamina.  I definitely tire more easily than I ever did pre-cancer treatment.  Add in the daily tasks of living, commuting, working full time, and by the end of the day I don't have the energy or attention span for anything that needs either of those commodities.  Thus, my long silence here.

Fortunately, Afinitor continues to keep my tumors from growing, which is obviously most important.  Now, I have scans again next week, so that news could change, but hopefully it won't.   But some days I definitely still feel like a cancer patient, between the fatigue, itchy legs, bowel troubles and occasional nosebleeds.  I've had a few nosebleeds while on Afinitor, not many and none severe, but I can definitely say that I've experienced more nosebleeds in the last 6 months than in the previous 47 years of my life.  And of course I've added a new activity to my repertoire... blood transfusions.  My red blood cell counts have really tanked - another Afinitor side effect.  In early June I went into the Clinic and had two units transfused.  The process itself was easy, thanks in part to having my port.  Since my port has two lumens (access points), the nurse accessed both to flush them, and then used one for the transfusion.  I later decided it looked like a small vampire had bitten me, only in reverse!

Above and to the right of the 'bite marks' is the scar from when the port was implanted almost 3 years ago now... it's become very faint.

So then I was ready for the juice.  As a preventive, I was given an anti-nausea medication, and an antihistamine to prevent or lessen hives, which I understand are an occasional effect of transfusions.  The antihistamine just allowed me to nap for an hour or so, which was great because my appointment was early in the morning, and because I'd had lab work drawn, I'd had to fast overnight, which meant No Coffee.  I spent the rest of the time playing on my phone and reading, while the good stuff dripped into me.

Such a pretty red, don't you think?

The transfusion had the intended effect within a couple of days; I definitely felt more energetic.  Dr. Rini told me that I might need to have transfusions periodically, and that period turned out to be shorter than I'd hoped, as when I was at the Clinic for my July visit my counts were way back down.  So I'm going to do it again on the 15th of August, unless I feel really bad before then.  I think I'll be okay, especially since this week is not expected to be as hot as it's been most of the summer here.  So it appears that I've added another intervention to my 'new normal'.  It's interesting how I've become used to these things as they've popped up; I don't even think about most of it anymore.  But when talking to someone not in the kidney cancer community, I realize that what I've now taken for granted is a daunting list of medications and interventions to the other person.  

UPDATE:  I wrote this post several days ago, meaning to put the finishing touches on it and send it out.  Lo and behold, my during my most recent period of procrastination, my saga has moved along.  On Monday I had my usual CT and MRI scans, and on Wednesday went to see Dr. Rini and to be transfused.  As a result of the scan results, I'm no longer taking Afinitor and so no longer part of the clinical trial.  I had a small  increase in size of the two mets in my liver, so I've "progressed" while on treatment, to use oncology parlance.  It's not much of a progression, fortunately.  Other than the changes noted below, there's nothing new and nothing else grew.

CT of Chest:
There are scattered pulmonary nodules bilaterally, all of which are less 
than 5 mm in diameter. For reference, there are two adjacent right upper 
lobe nodules, the larger of which measures 4 mm in diameter and is stable 
since 2/20/2012 exam. A 4 mm right upper lobe nodule us unchanged since 
the prior exam dated 6/18/2012 but is less dense than on the exam dated 
4/23/2012. 3 mm right upper lobe nodule (image 73) is stable since 
2/20/2012. No new pulmonary nodule. No pleural effusion, pneumonia, or 
pneumothorax. Central airways are patent. No endobronchial lesion 
MRI of abdomen/pelvis:

Status post left radical nephrectomy. There is no evidence of local 

The right kidney is normal in size. No focal renal lesions are present on 
the right. There is no hydronephrosis.

The liver demonstrates diffuse fatty changes. Again seen, two enhancing 
hypervascular lesions:

In hepatic segment VIII, 1.5 x 1.2 cm (series 19:26) previously 1.2 x 1.1 
In hepatic segment VI, 2.0 x 2.0 cm (series 19:12), previously 1.5 x 1.3 

There is a 1.2 x 1.0 cm enhancing retro-aortic soft tissue density above 
the level of the renal vessels is indeterminate in etiology but stable 
since the prior study.

The spleen, pancreas and right adrenal gland are normal. The gallbladder 
demonstrates multiple gallstones with no signs of acute cystitis. There 
is no intrahepatic or extrahepatic biliary dilatation.

No adenopathy. No ascites or fluid collection.

Again seen is a 1.4 x 1.2 cm enhancing nodule in the mesenteric fat in 
the upper mid pelvis (series 19: image 19).





However, progression = time to look for something else.  I asked Dr. Rini what else he had in his bag of tricks, which made him smile.  He had two options to run past me.

Go on Inlyta, the newest weapon in the renal cell arsenal, and which was offered to me in February when I decided instead to go with the Afinitor and the trial.  If I qualify, join this trial:

 Um, #2 please... I have been following with interest the comments of other RCC patients on this trial and on other trials using this drug, which used to be known as MDX-1106 but now is BMS936558.  (The letters in those names represent the drug company who makes the drug; in this case it was originally Medarex but then they were acquired by Bristol Myers Squibb.)  The trial drug is an antibody therapy, so works on the immune system, rather than on blocking protein pathways to keep blood vessels from growing to and from the tumor, like the other drugs I have been on.  This trial specifically is looking at pairing up this antibody therapy with a known RCC drug, either Sutent or Votrient, which are similar drugs though not exactly the same.  Since I have already been on Sutent and had progression of disease, I would have to be part of the Votrient arm of the trial.  According to Dr. Rini, there have been more toxicity issues reported with the Votrient patients than with the Sutent patients.  He and Laura will be on a conference call with other investigators this coming Monday and he will know more then.  There are a couple of other small issues to get through, but basically, if the trial is continuing to fill slots for people on the Votrient arm, I am likely to get in.  Please keep your fingers crossed for me as I'd love to try this new drug out.  If I don't make it onto the study, I will at least have Inlyta to fall back on.  So, I won't be devastated if that's where I end up, but I admit I will be disappointed!

Next week I will know more.  Until then, more waiting... and remembering that life is going on during the waiting period, as it always does.


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