#34657 07-27-2006 05:03 AM | Joined: Jan 2006 Posts: 101 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jan 2006 Posts: 101 | Erik had his three month check up two weeks ago, the ENT did a scope and told us that she thought everything looked good, she then told him that he needed a chest x-ray, CT scan, thyroid function, and Liver function tests. Well there lies the problem, Erik got the thumbs up from his doctor, but is procrastinating getting the other tests done. He says he just keeps forgetting, but I really think he is avoiding them on purpose. I have talked to him, nagged him, and even threatened him (with a padded baseball bat) I cant make him get these done, but does anyone have any advice in this area. I appreciate any words of wisdom here! Jennie
Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads. Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol- 3rd reoccurrence 5/18/12- partial glossectomy
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#34658 07-27-2006 06:53 AM | Joined: Jul 2005 Posts: 207 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Jul 2005 Posts: 207 | Hi Jennie,
he needs the tests. My thyroid was fried. the synthroid I take now really helps my energy level and general outlook. I am ready to get my annual CT scan and chest Xray whenever they ask. it is important to make sure nothing has spread. These are just preventative measures. My RO told me 90% of reoccurance happens in the first 2 years. Not sure if that is correct, but I really like the work he has done. None of these test hurt or casue pain. If I were your husband, the worrying would drive me crazy. it is also unfair to you being the caregiver. My wife would take the padding off the bat if I did the same. I feel she went through almost as much as I did, without the physical pain of course.
Good luck. if you want me to kick him in the but, I will.
Steve
SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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#34659 07-27-2006 07:36 AM | Joined: Mar 2006 Posts: 90 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2006 Posts: 90 | Jennie, I don't know if this helps but my father's ENT told us he prefers the family doctor to handle the blood tests(ie thyroid, liver etc.) My father was already on an every 3 month cycle with his family doctor so we just had the family doctor take the blood and do the test when he went. Just a thought if your husband goes to a family physician on a regular basis. I however agree with Steve he needs the test. I know easy for us to say. Good luck Kim
Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT. 25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
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#34660 07-27-2006 08:11 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Jennie, just let Erik know that this is standard followup protocol. I have the same exact thing every 6 months (except the chest x-ray - and an MRI that are done annually). It really needs to be done though. Make sure that he understands that it is HIS responsibility to make all of his followup appointments with the various doctors as well. He is the man of the house and supposed to take care of these matters (I guess you can cut him a little slack being its the first three months ;-). 3 months is also a natural time for depression to set and anxiety may play a role as well.
His followup intervals with change the further away he gets from the end of treatment. Let him know also that 3 months is pretty good - they made me go in every 1 1/2 months for the first 6 months. That meant bloodwork every 1 1/2 months. I have callous' on my veins.
I might add also that my MO managed all of my labwork, scan orders and still does. I go to the internal doctor for routine everyday things like sprains, tennis elbow and neck spasms.
It'll get better - the first ones are always the hardest and most anxiety ridden - you're waiting for the shoe to drop and then it just gets to be an in and out routine - just comes with the survivor territory - at least we don't have to eat live grubs or something with flies buzzing all over it!
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#34661 07-27-2006 08:39 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Steve, I would question them why they think a CT is a better idea than an MRI. 1 CT = 3 years of background radiation. The chest x-ray = to 10 days of background radiation.
The numbers I have read on recurrence are: IF (and that is a BIG IF) you are going to have one, the first year there is an 80% chance(with a 20% chance of dying from it if advanced stage), second year 15%, so by the beginning of year 3 the recurrence rate (at the original tumor site) drops to around 5%. That's why 1st and 2nd year anniversaries are important milestones.
And also, Jennie, the reason for the importance of keeping those followup appointments and tests current. Denial (and it's closely related brother procrastination) is not a river in Egypt.
NONE of us were looking foward to any of our early testing I can asuure you. He just has to get it over with.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#34662 08-01-2006 04:11 AM | Joined: Jan 2006 Posts: 101 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jan 2006 Posts: 101 | Thank you for your words, Now I know he is stalling, because he is reminded everyday!! He is also really struggling with the hydrocodones, he is taking way too many of them. I know it has to do with the anxiety, but it is pushing his depression even further. I cant get him to slow down on them. (I do know he has some pain) but not enough pain to be taking 7 or more a day. Im going out of my mind right now, the tension around here is pretty thick. He says that I need to mind my own business, and I'm pretty sure this is my business. Thanks for all you support! Jennie
Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads. Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol- 3rd reoccurrence 5/18/12- partial glossectomy
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#34663 08-01-2006 04:50 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Jennie, He's not taking the hydrocodone with tylenol and codiene is he? If so, taking more than the recommended dose of tylenol BY ITSELF can produce some very nasty effects. I got warned about this quite clearly when I was given liquid codiene and tylenol solution for pain from my most recent surgery. If the recommended dosage of what he has isn't working to help him with pain, he (or you) need to make a stink with the doc who presribed it until he gets something else that does work. Taking more than the recommended dosage on his own is a bad idea.
This discussion of other appts, though, is making me glad that my docs all take care of setting up these kind of tests for me, at the local hospital. I don't have to make my own appointments to have them done. If its imaging, the imaging dept. calls me and sets up a time upon notification from my doc. My MO does all the tests that involve bloodwork.
It deos get tiresome feeling like you spend all your time seeing docs and having tests and I can understand his dragging his feet because of that I guess BUT dragging ones feet isn't a good idea when you're talking about cancer followups....
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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#34664 08-01-2006 07:27 AM | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2004 Posts: 218 | Jen,
I have the scans every 6 months. and a Chest X once a year.
It is normal. And I understand that he is doing well.
I remember how hard it was to go to those post treatment scans. He will have to move past it. They wont find anything.
My thyriod was shot as well from radiation. The synthroid really does make you feel better. I didnt realize how much better until Mexicana lost my luggage when I was travelling to Mexico. After 4 days with out it, I had zits, I was constipated, and was dragging my butt pretty bad. In fact, it reminded me how I felt just prior to diagnosys.
so he needs to get this stuff checked out.
The hard part is over.
God bless.
SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04. 41 Years Old At Diagnosis
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#34665 08-01-2006 02:55 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Jennie, this may be "off the wall" but your comment about Erik taking all the hydrocodone reminded me of myself about 20 yrs. ago when I was taking Darvon for back pain [it is no longer on the market] i got totaly hooked on it and went from 2 a day to 6 or 7 a day. Is Erik possibly hooked on this drug? And you are right- This Is Your Business. Be Strong. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#34666 08-02-2006 04:17 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Jennie... I won`t give you any advice, you have had the best we have to offer. But.. I did want to let you know we are pulling for you, this caregiving experience is very hard. Its always the ones closest to you that get the brunt of it.
Is there anyone else in your family who he will listen to? Hang in there. Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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