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I am leery ahout Plavix. My PCP put me on it . One morning after showering, I noticed in the mirror that I had a purple stomach along a surgery scar from an aortic anneurysm. Yep, bleeding under the skin from the Plavix. Needless to say I called the Dr and trashed the Plavix.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Strangely enough there has been an artical in the sun newspaper today syaing that statins are causing many problems,one of which is muscle and leg problems.


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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Eileen Offline OP
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So I see the neurologist last Thursday. I'm still not certain why I need his opinion. The surgeon has told me both in December and July that a neurologist was going to tell me NOT to have the surgery because neurology had done a study and found that there was no benefit to women to have the procedure, however that the study was flawed because there were so few women in it that results weren't valid. So why send me there unless you are looking for an excuse to NOT do the surgery.

Anyway, so I meet with this guy. Can't say I like him. First thing he says is he wants to go over my meds with me 'to see if I know why I am taking each of these drugs'. I say the list with the correct dosages is in the computer. He says 'We don't use that computer, we have our own.' Well up to this past February, that was true but this bigass fancy hospital finally got smart and put all depts on the same system, but no I got a wise guy who doesn't want to use the system. They still make you fill out a form every time you get there but I don't bother memorizing the dosages anymore. Turns out he had looked them up 'on other computer. Then I have to sit there and explain to him what each of my meds are for. How dumb does he think I am?

Then he goes into his speil about the study and how they can't do surgery on my carotid because of the radiation and neck dissection and as far as he is concerned stenting the carotid is still and experimental procedure and in my case extremely dangerous because it is 95% blocked. The surgeon said 1-2% chance of stroke. Neurologist does NOT recommend I have the surgery. He wished it was a 100% blocked and says I'm probably not getting any blood to the brain on that side anyway. I said, 'what are we going to do when the other one blocks? It is already partially blocked? Leave me a vegetable like my father because you can't operate because one is 100% blocked and the other 80%?'. I then burst in sobbing tears out of both eyes. I haven't been able to cry since radation in 1997. That was sheer fear.

These guys are telling me the narrowing is caused radiation and neck diseection and then they seem to think that my left one which is already partially blocked isn't gonna do an 80% also. Cut me a break.

So he finally agrees to schedule an MRI and review the results with surgeon before making up his mind. I don't do MRIs but I've got no choice in this one. He wants some fancy new test run and it can only be run on the little MRI. I take a deep breath, schedule it 7:am the following morning that way I don't have to think about it for days, get my script for knockout pills and leave. Go to fill script and jerk left off the date and DOA number. Two hours at the pharmacy trying to get someone from hospital to call in new script which they finally did.

I DID it, I ACTUALLY DID it and survived. Talk about mind over matter. I took one pill a half hour before MRI. Looked at the MRI and it didn't look to be much tighter than a CT machine. Remember, I'm tiny, 108. I wouldn't want to be a 200 lb man in one of them. But then they got out the head mask and I freaked. You would think they would have warned a H&N cancer patient about that. So I popped another pill and in I went. Whoever wrote the symphony that those machines play will never get work in a concert hall. No wonder you need ear plugs and cotton buffers on the sides of your head. Sweet music it ain't. Slept like a log for 5 hours after I got home. Those pills knock you out.

Liz, the statins aren't the problem with the legs. I'm been on Pravachol for so many years with NO problems, probably 20-30 at least. Problem started aftr I added the Zetia which I'm going to ask to stop.

So tomorrow I meet with the surgeon at 1:45 to get results of MRI. Whether they do the carotid or not, they still have to do my legs. He he doesn't want to do the procedure I need a real reason, any BS about a study that says if has no effect because I'm a woman. How many woman in that study have had XRT to BOTH sides and neck dissections on BOTH sides. I need to know what the surgeon thinks my chance of stroke is from procedure and if they will be able to do procedure on left if we don't do right one before it gets 100% clogged.

Do you think this surgeon is just looking for an excuse for not doing this? Something here is fishy. Will let you know what happens.

Take care
Eileen







----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Eileen, I can see a doctor wanting to be sure all your meds are really necessary, though it seems to me that would be more the job of your primary care doc, but why you ahd to explain what each one was for to him is beyond me. And then he tells you he doesn't want to do the surgery--I can see why you reacted with tears. If the arteries on both sides are blocked, surely trying something is better than just waiting for the worst!!! Good for you for doing the MRI. The first time I had one, I freaked out about the mask a little too but compared to the OC mask, that mask is extremely roomy.

I really hope you get some good answers from the surgeon tomorrow and, if not, that you can go somewhere else and get another opinion.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Good luck tomorrow and lets hope they have a great solution.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Hoping all turns out ok.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Eileen Offline OP
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Well the sage continues. Saw the vascular surgeon on Tuesday. He still hadn't been able to talk the neurologist and hadn't looked at the MRI or couldn't bring up the results on the computer. Little strange since his secretary could get to it to print off a copy.

Finally, he gets a hold of the neurologist while I am listening. Neurologist says I'm getting plenty of blood to the head and does not recommend stenting. Then this doc goes into spiel again about study saying it has no effect on woman. I keep asking the same question over and over 'what happens if left gets blocked? Will you be able to stent it if right is 100% blocked? and he keeps ignoring it.

Now he tells me that stents tend to block again in 6 months in patients that have had radiation so he doesn't want to start the scenario. I had asked this question June 24, and got a NO PROBLEM. If it blocks again, we just put in another stent. He still hasn't answered me on the left side question.

So I ask if we can schedule the legs for end of August, he says NO and DEMANDS that I go to another hospital for yet a third opinion on the carotid before he will schedule legs. He doesn't think that not being able to walk two blocks is any big deal. My carotid which he REFUSES to stent is a BIG deal.

I ask the question about the left side as he is walking out the door and he finally gives me an answer of YES, they will be able to stent left if right is 100% blocked. That's a relief. I'm now finally comfortable, not not completely happy with not stenting it.

So I now have an appt on Aug 16 with supposedly one of the top cardio guys in Phila at Hahnemann. I don't know what I'm going to do if this guy says he thinks the right carotid needs have stent, get a fourth opinion. I'll about to outdo David. Maybe this new guy will at least explain to me what the MRI says.

We will see what happens next.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Posts: 2,152
Eileen Offline OP
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So I had the appointment with the top cardiologist on the 26th at Hahnemann. He reviewed my films and called late last Thursday and said he needs a carotid angiogram ASAP and to cancel my leg stenting which was scheduled for tomorrow.

So I am now scheduled for a carotid angiogram at Hahnemann on Weds Sept 3 at some unknown time. They will call me tonight. Depending on what the angiogram shows, he may then stent it on Thursday. He refuses to do more than one procedure at a time so legs will have to wait until carotid addressed. I like this new guy so am not too worried about the possibility of angiogram causing a stroke. My husband however thinks the 'do nothing approach' is just fine.

I will be out of work until at least Monday and since I can't post on the board from home, will not be able to give you an update until some time next week. Wish me luck.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Good luck, Eileen. I'll keep you in my thoughts this week. And thanks for the update. I had been wondering what was going on with this. I'm glad you like this cardiologist.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Eileen,

Good luck from across the Mighty Delaware.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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