Our FamilyForum
Our FamilyForum Welcome Center => Chit Chat & Humor => GPa & GMa's Medical Adventures => Topic started by: Ken on May 14, 2017, 09:15:58 AM
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Got a PET Scan coming up on Tuesday, 16th for a 9mm nodule in my left lung.
I'm told by my Doctors that this usually has a positive outcome, but with my history of kidney cancer, being a heavy smoker for 35 years and working as a welder for many years, including time working in the shipyards with all that asbestos makes it a bit more concerning for me.
I'm rather stressed this time around... way more so than when I went through the kidney thing in 2013.
Prayers will be much appreciated about now. :)
BTY... while all this is going on I'm in the middle of a struggle with my Lyrica dosage levels. My Dr had bumped me up to 600mg per day, but the side effects were (are) kicking my butt! If you watch on of the commercials on TV and check out the part where they list the side effects, I've got them all. :o
She just cut me back to 400mg per day, but I think that's too low, we shall see though.
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Here's some of the detail from the scan that lead us to schedule a PET scan.
CT ABDOMEN/PELVIS WO CONTRAST (STONE PROTOCOL)
INDICATIONS: PERSONAL HISTORY OF OTHER MALIGNANT NEOPLASM OF KIDNEY
COMMENTS:
4. New 9 mm left lower lobe nodule. Chest CT could be helpful in further
evaluation.
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I'll bet you are stressed out!
I've always joked about those commercials. How the list of side effects are longer than the rest of the actual commercial. There's a commercial for one drug that says if you can't breate call your doctor. How can you talk if you can't breathe??? Another says if you are feeling thoughts of suicide call your doctor. Isn't that contrary to what you want to do if you want to commit suicide? Most people don't want to tell that. Why sell a drug that would make you do that? Why does the FDA allow this???
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Lyrica has a lot of those side effects.
This from their site; About Lyrica (https://www.lyrica.com/about-lyrica)
... I've placed some of the important points in bold.
Important Safety Information & Indications
Important Safety Information
LYRICA is not for everyone.LYRICA may cause serious, even life threatening, allergic reactions. Stop taking LYRICA and call your doctor right away if you have any signs of a serious allergic reaction. Some signs are swelling of your face, mouth, lips, gums, tongue, throat or neck or if you have any trouble breathing, or have a rash, hives or blisters.
Drugs used to treat seizures increase the risk of suicidal thoughts or behavior. LYRICA may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Patients, family members or caregivers should call the doctor right away if they notice suicidal thoughts or actions, thoughts of self harm, or any unusual changes in mood or behavior. These changes may include , dangerous impulses or violence, or extreme increases in activity or talking. If you have suicidal thoughts or actions, do not stop LYRICA without first talking to your doctor.
LYRICA may cause swelling of your hands, legs and feet, which can be serious for people with heart problems. LYRICA may cause dizziness and sleepiness. You should not drive or work with machines until you know how LYRICA affects you. Also, tell your doctor right away about muscle pain or problems along with feeling sick and feverish, or any changes in your eyesight including blurry vision or if you have any kidney problems!!!!! or get dialysis.
Some of the most common side effects of LYRICA are dizziness, blurry vision, weight gain, sleepiness, trouble concentrating, swelling of your hands and feet, dry mouth, and feeling “high.†If you have diabetes, tell your doctor about any skin sores.
You may have a higher chance for swelling and hives if you are also taking angiotensin-converting enzyme (ACE) inhibitors so tell your doctor if you are taking these medications. You may have a higher chance of swelling of your hands or feet or gaining weight if you are also taking certain diabetes medicines. Do not drink alcohol while on LYRICA. You may have a higher chance for dizziness and sleepiness if you take LYRICA with alcohol, narcotic pain medicines, or medicines for anxiety.
Before you start LYRICA, tell your doctor if you are planning to father a child, or if you are pregnant, or plan to become pregnant. Breastfeeding is not recommended while taking LYRICA. If you have had a drug or alcohol problem, you may be more likely to misuse LYRICA.
In studies, a specific type of blood vessel tumor was seen in mice, but not in rats. The meaning of these findings in humans is not known.
Do not stop taking LYRICA without talking to your doctor. If you stop suddenly you may have headaches, nausea, diarrhea, trouble sleeping, increased sweating, or you may feel anxious. If you have epilepsy, you may have seizures more often.
INDICATIONS
LYRICA is indicated to treat fibromyalgia, diabetic nerve pain, spinal cord injury nerve pain and pain after shingles. LYRICA is also indicated to treat partial onset seizures in adults with epilepsy who take 1 or more drugs for seizures.
Please see full Prescribing Information and Medication Guide.
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Yes, but the commercials I see are a bit different. And do not say all of that or say it differently. But then again, they are trying to sell a product. :P
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Just remember to try to stay calm! Stress can only add to your problems! Breathe deeply when you feel stressed and try to relax. :)
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Good advice and I'm taking that into practice.
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The scan was OK, except for holding your arms above your head for 30 minutes. :o
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Great! Did they give you the results yet?
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Great! Did they give you the results yet?
Not yet... it should be a couple of days before the results are published.
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Still no word on the results from the PET scan, going back to the Dr on Tuesday and should get some info then.
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Keeping my fingers crossed...
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Thanks. 8)
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Just got back from seeing my chest specialist and the news is a bit mixed. The scan showed that there are a few smaller nodules in both lungs, but for now he recommends taking a wait and see posture. In three months I'll go in for a CT scan to see if the nodules are any bigger and then decide from there on a course to follow.
At this point there is not any need to be stressed over this finding, but most definitely something to keep track of.
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Good deal!!!
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Time to update this topic and I'll do so in some detail soon.
For now the short version is this:
Finally got back for the (re)scans and they first gave me a CT scan that didn't look so good, so next they gave me a PET scan and that news pretty much sucks.
Some good news; although both of the lungs now have several spots and the spots are bigger they do not think that it's cancer.
Now the bad... there is a mass growing where the right kidney was removed in 2013, so this coming Tuesday they are going to take a biopsy to try and see what it is.
I'm hoping for the best, but it was cancer before when my kidney was removed, so what are the odds? :o
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Well, just stay positive and hope for the best. :thumbup:
I'll keep you in my prayers!
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Thanks Steve.
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I meant to ask how long will the biopsy results take?
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I've not heard that information yet, but there are labs in the hospital so it should not take long.
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OK, biopsy done. :thumbup:
It went well and produced a bit of good news... the procedure itself was more boring and tedious than anything else, long waiting periods and only a short time on the table, about 20 minutes. Total time for being in the clinic was about five hours. :o
The good news was related to the size of the tumor/mass... it's about the size of an olive and not the size of a baseball as had been the original assessment. So, samples taken and sent up to the lab and now we wait to hear back on those test results, we should hear those on Thursday or Friday.
One note on the prep... one of the meds that they gave me was Dilaudid and I find it to be very nasty stuff. I know that some people do get hooked on it, but to me it's just a totally shitty medication. It made me feel very 'sickly' and weak yesterday after they gave it to me and I'm still feeling like crap today. Next time I have anything done I'll pick morphine instead of this junk.
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Great news!
Morphine may also keep you higher longer. LOL
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Morphine may also keep you higher longer. :hah!:
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Got the results of my biopsy and the news is what we expected, my cancer has returned.
Final Diagnosis
Abdomen, right nephrectomy bed (mass), needle core biopsy: Findings consistent with renal cell carcinoma.
Next we'll be seeing a cancer specialist to set up a treatment plan... hopefully some sort of radiation, chemo, or the like... and, hopefully not surgery.
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We will keep you in our prayers to help speed things up.
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We will keep you in our prayers to help speed things up.
Dito
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Thanks guys... at least this time no one is talking about taking out my kidney! shocked003
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That's a good thing! ;)
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Update on my Oncologist visit of yesterday, the 8th.
My Doctor, Heather, (love that name!) said surgery was not the way to go on the small renal cancer cells in my lungs and the one in my kidney(former) bed because they are small and very slow growing. We opted for the pill, 'Votrient'. We will have a brain scan done to make sure that it has not metastasized to the brain. If it has, we do nothing. If I can tolerate the pill we will do that, or, if not, there is another pill that has to do with genetics that we may have to use. Whatever, I will fight this. Everything is small, so hopefully , taking this pill helps and it eventually goes away!
... although Votrient may at first sound a little like a chemotherapy drug, this info from their WebSite (https://www.hcp.novartis.com/products/votrient/?site=43700019383663447&source=01030) calls it 'targeted therapy
How Votrient Works:
Votrient is not a chemotherapy drug but one of many "targeted therapies." Targeted therapy is the result of about 100 years of research dedicated to understanding the differences between cancer cells and normal cells. To date, cancer treatment has focused primarily on killing rapidly dividing cells because one feature of cancer cells is that divide rapidly. Unfortunately, some of our normal cells divide rapidly too, causing multiple side effects.
Targeted therapy is about identifying other features of cancer cells. Scientists look for specific differences in the cancer cells and the normal cells. This information is used to create a targeted therapy to attack the cancer cells without damaging the normal cells, thus leading to fewer side effects. Each type of targeted therapy works a little bit differently but all interfere with the ability of the cancer cell to grow, divide, repair and/or communicate with other cells.
There are different types of targeted therapies, defined in three broad categories. Some targeted therapies focus on the internal components and function of the cancer cell. The targeted therapies use small molecules that can get into the cell and disrupt the function of the cells, causing them to die. There are several types of targeted therapy that focus on the inner parts of the cells. Other targeted therapies target receptors that are on the outside of the cell. Therapies that target receptors are also known as monoclonal antibodies. Antiangiogenesis inhibitors target the blood vessels that supply oxygen to the cells, ultimately causing the cells to starve.
Votrient is designed to block tumor cell growth in several ways. Votrient targets several proteins (called tyrosine kinases) on the surface of cancer cells, as well as targets within the cell. Several of these targets are thought to be involved in angiogenesis (making of blood vessels). By blocking these targets, it is hoped the cancer will shrink.
Research continues to identify which cancers may be best treated with targeted therapies and to identify additional targets for more types of cancer.
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They can do so many things today with cancer it mind boggling! Well, here's something to pick you up!
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That song is a good fit. :thumbup:
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I thought you'd like it. LOL
Sorry, was doing dishes.
EDIT: Could also be used for a Anti-Trump song! :2funny:
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I thought you'd like it. LOL
Sorry, was doing dishes.
EDIT: Could also be used for a Anti-Trump song! :2funny:
laughing7
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Needing lots of prayers and a bit of luck just now! :thumbup:
Wednesday 22, I'm having the MRI brain scan and an Echocardiogram test to make sure that the cancer has not migrated to my brain. My Oncologist thinks that the risk that it has spread is very low, but still the risk is there, so there is a small bit of stress going on here. I'm not freaking out, but I am feeling a little nervous. :whistle1:
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Oh, so that's what's wrong with your brain. I thought it was old age...
Lots of prayers coming your way, bro!
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Oh, so that's what's wrong with your brain. I thought it was old age...
Lots of prayers coming your way, bro!
UR2 funnie Steve! laughing7
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Wish me luck and send some more prayers... gots the 2 scans this afternoon. 8)
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Done and done!
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Well, that were fun. laughing7
In and out in about 3.5 hours for both tests and both took way less time than advertised. The Echo-cardiogram was about 15 minutes and the MRI brain scan was about 25 minutes, both were scheduled for one hour each.
No results will be available until at least Friday, so it will be a long wait... but, the MRI tech did say that I could call the imaging clinic if my Doctor is not in on Friday, so at least we won't have to wait until Monday or Tuesday of next week.
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Thanks for the update, Ken. I'll be waiting...
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Great News!!! :banana:
Just got the report on my MRI brain scan and it comes back negative, so no cancer in my brain! :hah!:
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Excellent news! Prayer does work!
So...what's the real problem with your brain...
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So...what's the real problem with your brain...
UR so funnie! :hah!:
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I'm just glad everything is OK now. :)
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Thanks Steve, so are we. :thumbup:
Next is the chemo treatments... going to see my Dr later today and she is set to start me on the Votrient. The hope is that it will hold at bay the cancer in my kidney bed and lungs and I'm actually feeling rather good about that because we caught this very early on.
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That's the key to success.
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Took the first dose of chemo (Votrient) today at about 1:30 PM.
The cost on this stuff is astronomical!!!
Depending on where you have it filled, the cost will run from $10,000 to $12,000 per month and I thought that a price of $21,000 came up in one of my searches but can't find that now. My copay would be from $585.00 to $1300.00, but my Dr was able to get me into a grant program that covers that copay. :disturbed:
Now we'll just have to closely watch for any side effects... one is loss of appetite and in my case that would be a good thing.
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Great! Glad the Doc was able to help with the grant.
Side effects? Sounds like another excuse for his brain mishaps...
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Whut... U talkin' to me??? laughing7
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This chemo that I'm on just sucks ass! :-\
I sure am blessed in that my Dr didn't put me on the hard core chemo where you get injections and lose your hair.
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Hmmm, I didn't know there was a type that didn't make you lose your hair.
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This one 'may' cause hair loss, but maybe not. So far, my main side effect is total fatigue and lots nausea.
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That's still gotta suck a lot.
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Yepp... it do. :o
But, this afternoon Kay asked me what do I want for Christmas and me said, "I already got my Christmas present when the Doctors gave me my diagnosis." So, Kay says, "Are you crazy? She told you that your cancer was back." So me sez, "Yes but if they didn't catch it when they did it might have spread to my cranium and me would not have made it for Christmas next year!" :hah!:
For some reason she didn't think that was funny. laughing7
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LOL, always remember to be thankful for what you've got. It could always be worse...
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Sort of thing I would say to Lisa, she would not find funny, never understand women lol
Just get well soon Ken, we are always thinking about you :thumbup:
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You've lost your sig, Les. For some reason I lost mine and had to add it again. Maybe the smf update?
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You've lost your sig, Les. For some reason I lost mine and had to add it again. Maybe the smf update?
Steve, just a heads up, I get this error when I click your sig,
Forbidden
You don't have permission to access /docs/index.php on this server.
Additionally, a 403 Forbidden error was encountered while trying to use an ErrorDocument to handle the request.
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What the hell? It worked earlier! LOL Has to do with the redirect I'm thinking...I need to fix that. It works on my site and I copied and pasted it to here!
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Sort of thing I would say to Lisa, she would not find funny, never understand women lol
Just get well soon Ken, we are always thinking about you :thumbup:
Thanks Les. :)
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Thanks Steve for checking on me, it was great talking to you! 8) ...Steve called me last night.
This med that I'm on, "Votrient", takes a toll on my energy levels to the point of not having any at all... so I've not been on much lately. There's no word on how long that the treatment will be needed, the only thing that my medical team would say was, "... as long as it takes." laughing7
Hope that all of you are having a Joyful Christmas Season. :thumbup:
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Take all of the time you need! I'm just glad you're still with us. LOL
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Yes, me too. Being here is better than the alternative! shocked003
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LOL, that's what my grandfather always says. LOL
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Thanks Steve for checking on me, it was great talking to you! 8) ...Steve called me last night.
This med that I'm on, "Votrient", takes a toll on my energy levels to the point of not having any at all... so I've not been on much lately. There's no word on how long that the treatment will be needed, the only thing that my medical team would say was, "... as long as it takes." laughing7
Hope that all of you are having a Joyful Christmas Season. :thumbup:
Ken, feeling for you mate, I hope it's not making you too uncomfortable. Wishing you all the best, and hope you make a speedy recovery.
Happy Christmas to all at OFF. Just had Christmas dinner, and about to burst. :eat: :tick:
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We are cooking dinner right now.
Merry Christmas to you and your family, Mick!
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Having a brief, two day, respite from my chemo because the past three weeks have been brutal. :o
Between the total fatigue and the constant, all day long diarrhea I've been pretty much incapacitated, so on this past Wednesday my doctor decided to cut my chemo dosage in half and gave me a two day break from taking the meds. Today I've been feeling so much more normal, but the new dosage starts tonight at bed time, so we'll see how it goes for tomorrow.
And, so far I've lost 15 lbs and about a third of my hair. laughing7
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Losing weight is good and who needs hair? Look at Kojack and The Rock...
Glad you're feeling better. :)
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Thanks Steve.
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Prayers, wonderful Care Givers... and Votrient (Pazopanib)!!!
I need to be sending out a really big thank you for all the prayers and another big thank you to all of my care givers, especially to Kay because she helps me navigate through all this cancer mess.
And, to my Doctor, Heather H Shearer, MD... she got me set up with the chemo that has caused my cancer to shrink! :hah!:
Here is the quote of the results of my PET scan from earlier today:
Study Result
Impression
IMPRESSION:
1. Decrease in size of lung nodules
2. Decrease in size of soft tissue nodule in the right nephrectomy bed.
3. The tumor was shown to not be FDG avid on prior studies. More accurate measurements could be obtained with diagnostic CTs if clinically indicated.
Narrative
INDICATION: lung nodule, metastatic renal cancer
TECHNIQUE: 11.8 millicuries of F-18 FDG was administered intravenously. PET imaging was obtained from the skull base to the mid thighs. CT images were obtained for attenuation correction and localization purposes. Glucose level was 94 MG/DL. Time from
injection to scan was 69 minutes. Comparison 10/19/2017.
FINDINGS: Decreasing size of lung nodules. A right upper lobe nodule on image 113 measures 5 mm right of the 9 mm. A left base nodule on image 146 measures only 5 mm compared to 13 mm. No new nodules.
Right nephrectomy. The soft tissue nodule in the right nephrectomy bed measures 9 x 10 mm compared to 16 x 13 mm.
Small right adrenal nodule is stable. Gallstones. No biliary ductal dilatation.
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And... some white hair! laughing7
Chemo usually has some rather profound effects on ones body and mind and my experience surely bares that out. One rather interesting effect is my hair... a lot of it has fallen out and whats left is turning WHITE! :hah!:
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Now, you're starting to look your age. LOL I'm so glad things are turning around!
Been quite busy lately trying to get my PC issues fixed and moving all of my sites (and yours) to a new server. So far, everything is now working with just a couple of minor issues that shouldn't affect the sites.
Damn Chrome is still a problem so I may have to trash it and reinstall it...
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Needing some prayers about now... gots a new PET scan tomorrow @9:30AM to see if the Chemo has continued to shrink my cancers.
#prayingforgoodnews
(https://tinypix.top/images/2018/07/16/Oy7ao.jpg) (https://tinypix.top/i/Oy7ao)
#fingerscrossed
(https://tinypix.top/images/2018/07/16/OyA0X.jpg) (https://tinypix.top/i/OyA0X)
#begladwhenicangetoffthesemeds!!! :hah!: :hah!: :hah!:
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Well, the PET scan went off OK... now we just need to wait for the results. 8)
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We gots the old "Good news, bad news" thing going on here!
The good news... the cancers have not gotten any worse and there are no new cancers.
The bad news... the cancers have not gotten any better! shocked003
I'll be going to see Dr Shearer on the 23rd and she will likely change the dosage on my meds, I remain hopeful because we already know that the Votrient works... just need to get the dosage right. :)
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Glad things aren't getting worse! I was praying for you. I've read this but have been busy and didn't post to it yet.
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Had a CT Scan last Thursday and now off to see my Oncologist this morning to get my results! :huh1:
Hoping for a good report, been kind of sickly for the past couple of weeks tho.
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Prayers are on the way, bro!
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Thanks Steve.
The news is good. 😎
Basically everything remains the same as before with the cancer nodules staying the same size and with no new nodules appearing. The next scan will be in six months so my Doctor is confident that we(me) are doing good on this treatment.
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That's good to hear! :)
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Got two scans coming up on Monday, 9th:
GWSM US ANKLE BRACHIAL INDICES EXTREMITY LIMITED
This scan is to check the blood flow in my legs and feet to see if the flow is so low that it is impacting my leg and feet pain.
GWSM CT CHEST ABDOMEN PELVIS W CONTRAST
This scan is to check the status of my cancer and of course, the hope is for no new nodules and no growth in the existing cancer nodules.
Please send me your prayers for this scan.
And then there's the Oxy!
oxyCODONE-acetaminophen 10-325 mg per tablet
Commonly known as: PERCOCET, ENDOCET
Oxycodone is a very worrisome medication.
The Lyrica that I take for my leg and foot pain works great, but because my dosage is maxed out on the Lyrica something is needed as a supplement, so that's where the Oxy comes in. For some years now the dosage level has been 5mg tabs taken up to two times a day as needed but sadly, of late, that is just not getting the job done, so my Dr. bumped me up to 10mg tabs up to two times a day. I've never checked to see what the upper limit is for this med because, for all of these years I've not used very much of the meds, my last refill for a 30 day supply actually lasted me seven months and the refill before that lasted me a year. I would take 1-2 tabs a week at most with a rare week a few times a year when I would take up to three tabs in one week.
But now, for the past two months, my condition seems to be getting worse with my two tab days getting to be more and more often and for the past three weeks I've been taking at least one tab almost every day! So, on Thursday Dr. Vanessa bumped me up to the 10mg tabs... hopefully this will return some balance to my routine.
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Oxycodone always worries me. There's a lot going on with that drug lately and that's what almost killed my grandfather and led him to go stay with my sister.
As far as your legs go, I wonder if you have what Les had...vericose veins
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Oxycodone always worries me. There's a lot going on with that drug lately and that's what almost killed my grandfather and led him to go stay with my sister.
As far as your legs go, I wonder if you have what Les had...vericose veins
I do have some damaged veins, so that is definitely one possibility.
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Sorry for not updating in a timely fashion, but my daily condition is a bit sucky just now.
The scans were good, my leg blood flow is fine and the cancer status remains the same and that's a good thing. As for my daily condition, I'm having constant very heavy fatigue that causes me to hit the bed several times a day, but at the same time only I sleep for two-four hours at a time. We've just made a medication change that will hopefully offer up some relief, the trouble is though, the medication that I'm coming off of stays in your system for 5-10 days.
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Yeah, I figured it was something like that. It usually is when you're not around much. Get well soon!
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Scans... Scans... And more scans!
... I've reopened this older topic because the subject matter is the same.
Had a new CT scan this past week and it shows that one of the nodules in my lung has doubled in size over the past six months!
Up until now the cancer nodules in my lungs have been considered to be kidney cancer because that's where this all started, but now we are thinking of it as possibly being lung cancer and that means RADIATION!!! shocked028
So, my oncologist set me up to see Dr Oh, a Radiation Oncologist, to talk about how radiation therapy would work. Now we wait for six weeks and then take another scan so see if it's still growing and if it is then I'll likely start getting zapped!
Oh, and Dr Heather increased my daily dose of my chemo drug from 400mg to 600mg, bringing with it all that joy. laughing7
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Oh boy, here we go again...
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Anybody got any wigs for loan or sale??? :cry2:
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I figured at your age the hair part shouldn't matter. But I'll keep an eye out for sales.
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I figured at your age the hair part shouldn't matter. But I'll keep an eye out for sales.
:groan:
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Great news on the Tattoo front! :banana:
Had a new CT scan this past Thursday and the nodule in my lung has remained the same and that indicates that the nodule can still be considered as kidney cancer and not lung cancer. And, that means that I don't need the three Tattoo's that are part of the radiation treatments.
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I sent out a text to my Fam about the news on the scan and my DIL Deb posted this video. laughing7
Kool & The Gang - Celebration (Official Music Video)
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Very glad to hear the news! :)
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What Goes Around Comes Around!
... remember that old saying? Well about now I feeling like total crap and that old phrase is floating around in my head. :o
So, here's the story:
Went in to see my oncologist, Dr Heather on Tuesday and as expected we decided to cancel any radiation treatments for now and that's great, but we also decided to increase my chemo drug Votrient to 800mg per day.
In This Post (https://www.ourfamilyforum.org/FamilyForum/index.php?topic=4231.msg17927#msg17927) from back in December, 2017 you can see where I first went on the drug treatment and she had started me on 800mg per day because that's the recommended dosage level, but it turned out that my body simply could not tolerate that level so she dropped me down to 400mg per day. That level worked to keep the cancer in check and although the side effects very troublesome, they were not unbearable so everything went along smoothly for a while.
Now fast forward to December, 2020 and A New Scan (https://www.ourfamilyforum.org/FamilyForum/index.php?topic=4231.msg22265#msg22265) showed that one of the nodules in my lung had doubled in size and as part of the series of events that followed Dr Heather bumped my dosage level up to 600mg per day and that seemed to work just fine and not only did that dosage hold the cancer in check it didn't seem to change any of my side effects.
So... during this last visit on Tuesday we're talking about the scans and not doing the radiation and the fact that my side effects on the 600mg didn't seem to be that different than what I had been having on the 400mg and how maybe I should go back on the 800mg dosage level.
So like I was saying, I'm sitting here at 2:30AM feeling like total crap and wishing that I could just please go to sleep already. laughing7
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Well, I hope you feel better soon. :)
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Well, I hope you feel better soon. :)
Thanks.
Yeah, me to! laughing7