13 replies to this topic

[Susan61]

Hi:  I had my most recent appointment with my Oncologist in July, and she told me the new protocol is that I have to have a Ultrasound every year or 6 months to be sure my spleen is not enlarged.  Maybe this is a stupid question, but why would my Spleen be enlarged now after being PCRu for so long, and never had a enlarged spleen even at diagnosis.  Has anyone else been told they have to do this.  I am in no hurry to get it done.

[Trey]

Not useful.  Why can't they just do the "feel for my spleen with your hand" thingy if they think it is important, but it isn't.   And if you did have an enlarged spleen they would do......what exactly????  And it would prove......what exactly???  The spleen is a responder to the blood cell counts; if they are OK, your spleen will be OK, unless it has "gone stupid" on you, but that is another issue unrelated to CML.

[Susan61]

I was waiting for your reply.  I go through that pressing on the stomach thingy.  Like I said I am in no hurry to do it.

I only see her every 6 months with a blood test every 3 months, so I will wait.  I did not see the necessity for it either.

Thanks

[Marnie]

Sounds to me like it's a new protocol for making money.

Hope you are well, Susan.  All the best to you and your husband.

[cleocans]

I had my latest appointment in July to.  My oncologist never mentioned it and I had an enlarged spleen at diagnosis.

[CallMeLucky]

I have been seeing my Dr quite frequently and I have been having upper abdominal pain on the left side.  I even said to him, "is it possible this is my spleen".  Then he did the "feel for my spleen with your hand" thingy and said my spleen was fine.  He never mentioned anything about an Ultrasound.

I checked the most recent copy of the NCCN guidelines and the word "Ultrasound" is not found anywhere in the document.  When you search on spleen you can see that all references to checking spleen call for manual palpitation.

So when your Dr says it is a "new protocol", the follow up question needs to be "what protocol are you referring to exactly?"

I don't want to be the pessimist, but I think Marnie hit the nail on the head.  This is a medium cost non-invasive procedure, it's a cash cow.  There is no risk to patient, easy to justify, yet it appears quite unnecessary.

[hannibellemo]

Hi, Susan,

10 years, PCRU, really, and they're looking for what exactly? Nah, I agree with everyone else this is a cash cow for them. Palpation by hand is all you need. CBC normal, not going to be a spleen enlargement.

I'm surprised your doc would even try to get away with that. You have every right to say, "Thanks, but I don't see the need - neither do my BIFs!" 

Pat

[Susan61]

HI:  No I am not going to do it.  I do not see her till January, and when I see her I will tell her I forgot all about it.

I am very busy taking care of my  husband, and his issues without running for a unnecessary ultrasound.  He will be starting chemo for his Bladder Cancer, and we just got done with him at the hospital for a consult on his Carotid Artery.

      Just for information for anyone, but a bit off the subject regarding Carotid Arteries.  If you have a 100% blockage like he has on his left artery, they do nothing.  He said you cannot have a stroke with a 100% blockage because there is no way for a clot to dislodge.  However, on his right side he has a 40% blockage that has to be monitored every 6 months so it does not go to 100%.  He also said we have 2 arteries in the back of our head that compensates for blood flow for the one that is blocked.  So I learned something new in the Cardiology Dept.  Bad news is that if the other artery was to block up 100% it would be a massive stroke.  So Yea!!!  I am not concerned over a ultrasound of my spleen.

Thanks for asking about Gary.

[hannibellemo]

Susan,

I'm so sorry! I may be the only one on here who missed the post about Gary having bladder CA. I knew about cardiac issues and those appear to be not of the greatest concern right now.

I'm sure you are beside yourself.

You are both in my thoughts and prayers and I hope Gary tolerates the chemo well and it gives him relief from the symptoms. I don't know what you've been told to expect so I just hope all goes well!

Pat

[pamsouth]

Susan what will they come up with next.  And she is the oncology who won't even let you try 300mg of Gleeev, even for any  length of time, and perhaps that might help some of your other helath care issues. 

I am so sorry about your husband's cancer.  You certainly have a lot on your plate then worry about a needless ultrasound.

I did not know that is you have 100% artery blockage they do nothing because there is no chance because the clot cannot dislodge, right?  So could they not have caught it before it got that far?  I mean that is really scary to think he had that much blockage and didn't know?  At what point or blockage do they do surgery, like 60 or 70 %??  I mean that seems to be a bit of a trick to catch it at the right time that Insurance will pay for it but you do not have a storke.  I am following what you are saying, Ok?

PamSouth

[Susan61]

Hi Pam:  Gary had no symptoms.  We went for a routine 6 month exam, and for some reason the doctor listened to his carotid artery.  She heard some bruits in the left side, and sent him for a Carotid Ultrasound, and thats how they found it.  To try to operate on anyone with a 100 blockage could cause a stroke faster than leaving it alone.  Yes Probably at around 60% they would put a stent in or operate.  I posted it because it was a something new that I learned, and wanted to share it.  The same week my husband went for a 6 month check up on his Prostate Cancer which he is free of cancer now 10 years.  They just made him give a urine sample as usual, and they found microscopic trace of blood in the urine, and then he had to get a Cystoscopy which is how they found his Bladder Cancer.

Its just like most of us who have CML.  How many of us just had a routine blood test, with no symptoms and was told we have CML.  Thats what happened with me.  My 6 month routine blood work and check up, and there it was.  Hope your doing good with your Kidney functions.  Mine are holding steady right now.  I asked the doctor if she thought it was from the Gleevec, but she blamed it on my blood pressure medication.  Just cannot figure it all out.

[pamsouth]

Susan regarding the kidney.  All my docs did the same thing blame, it on my blood pressure.  However the first week I went to the kidney doctor.  I told him since 1997, I had been taking Triamterene 37/25 which is 37mg blood pressure and 25 mg diurectic, plus another blood pressure med.  I asked him if I needed the duretic as I had been told by a couple of cardio doctor etiher not to take it, or take it every other day at best, because it would dehydrate my kidneys.   However at the wish of my primary doctor I continued to take it.  The kidney doctor asked me if my lower legs, ankles, or feet swelled.  I said no, just hands started swelling a few years ago due to some arthritis and bone spurrs.  HE told me to try not to take the diurectic, so I have only been taking it, a mazide 20mg, once a week, and it seems to be working out.  So at my second oppintment with the kidney doctor, after the blood labs, urine test, ultra sound.  He said the kidney desease was due to blood pressure problems, he did not says med's, just blood pressure over long period of time.  The good news I did not have any protein or blood in my urin, and my ultrasound was good.  However i was exstremely low in Vit D2, which is from plants, D3 is from animals and sun, I think.  So I take 50,000 unit of VD2 once a month.  I go back to my dermatologist to get some vit B12 shots once a week.  So hopefully some of these vitimins will help with some other issues.  I think that when your kidneys are not up to par your body does not always absorb the vitimins.  The kidneys are the king pin in all this, even regulate your blood pressure, electrolytes, fluids, waste, etc.  Would hate to lose them.  So go back to kidney doctor in 6 months.  When I think of stage 4 that is when they started hooking your wires and stuff up for the dyalsis.  I am trying not to think to much about it.  However I did get my onc to lower the dose of Gleevec to 300mg, well that is on a trial bases.  Praying the 300mg will keep me in a safe range even though it will be dedectible.  Seems everything is a trade off, who knows long term side effects.  I put my Kidney's right up there as important as CML.  With my  kidney well I would be checking out.  I recently had dental surgery and had to take ibuprofen and tyelonol, got brusies on my legs and blood thing.  Glad I am off of them.  Try not to take any more pill than I have to with this Gleevec.  Oh, my GFR is staying somewhere between 56 and 60.  HE said at my age 65 years, the norm would be somewhere around 80 or 89.  My husband is 72 years old in October and his GFR is 89, he only take a small dose of blood pressure Lisinopril 5mg and 1000mg a day of metaformin. 

P.S. Lost my gall bladder in 2007.  Surgeon said it looked good.  Test said the Bile Duck didn't open right, I seem to have problems with damaged tubes running from organ to organ. 

Praying for all to go well with Gary. 

PamSouth

[CallMeLucky]

Sorry to hear about your husband Susan.  I will not make light of any diagnosis, I have very little knowledge of Bladder Cancer, the only thing I can tell you is my grandfather has had it for a number of years and he is doing well.  I know all cases are unique but hopefully your husband will have a similar experience as he has had.

I wish you both the best...

[Susan61]

Thanks Lucky:  I have not even been on to keep up with all the topics.  I should not talk about Gary's problems, as this is a CML board.  Everyone is telling him he will do fine.  I will send you a personal message, as I have a question if you do not mind..

Susan