| | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | OP  "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Just when I thought things were going well, Kris has had a setback. He had become very tired and listless with a staggering gait. Developed severe constipation and then the hiccups started again. I wondered if there was a tumour on his vagus nerve.
I took him into the GP, had blood tests done to check electrolytes. The GP called us at home and sent Kris to hospital. He has severe hypercalcaemia and acute kidney failure. Since the surgery in march he has had to take calcitriol a Vitamin d supplement to support calcium in his body as his parathyroid no longer is functioning.
Recently he has upped his intake of smoothies which are high In dairy products and calcium. I think that this coupled with the calcitriol has precipitated this event.
Of course bony metastasis also cause hypercalcaemia. I hate how my mind works.
There is no indication of any bony spread. Please Lord do not let this be the case.
After 2 days in the hospital, he is slowly returning to normal. Although they are having to chase his electrolytes like potassium, magnesium and phosphate.
He is also thyrotoxic so have stopped the levothyroxine for now.
Anyone had experience of this?
90% of my head says this is due to the medications and high calcium diet. But my head talks to me re the other cause.
Thanks for listening,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Oct 2012 Posts: 118 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2012 Posts: 118 | Oh Tammy I am so sorry this has happened. Remember to not get ahead of yourself. If he is improving than this is a good thing. Do you know if they will give him a bone scan to see if there is a problem? Have his kidneys begun to respond? Have they checked him PVD? That can cause accute kidney failure. That is peripheal vascular disease. Keep the faith and keep us posted...
Bette/CG to husband Reggie 66
dx 1: SCC Soft Palate (12/06)
tx: chemo and rad
dx 2: SCC 6 cm tum rt. vocal chord (12/09)
tx: total laryngectomy with stoma, 2 nodes
dx 3: SCC 4 cm tum BOT (10/16/12)
Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | Sounds like they are on top of it and they need to tweak his supplements. Fingers crossed its nothing hon. If he's getting back to normal then that's a good sign. Hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Kris is so lucky to have such an aware caregiver! Glad to got him all checked out when you noticed him not acting normal. Hope he gets all straightened out quickly.
Radiation does a number on the thyroid. Many OC patients take thyroid meds for life, myself included. Its not a big deal but we do need to stay aware and watch for changes like what Kris experienced.
Best wishes for a speedy recovery!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Haven't read those complaints since I've been on this site but I'm glad you're on top of things. Great Caregiver!!!
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.
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | OP "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | The problem is not with the thyroid gland.
It is the Parathyroid which sits under and below the thyroid. This was fried along with the thyroid during radiation. The Parathyroid is responsible for the release of calcium from bones.So as well as taking Levothyroxine for the thyroid he has been taking Calcitriol which is a form of Vitamin D to help him absorb calcium from his diet. Now that he is taking less of the supplement drinks and more smoothies his calcium levels have soared, making him one sick puppy.
All his electrolytes are out of kilter and he is having drugs to bind calcium, but supplements IV of Potassium, magnesium and phosphate. They told me this morning that he will likely be in hospital for another week as they correct this problem and the acute renal failure.
Wish I could just be his wife and not his nurse.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Oct 2012 Posts: 118 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2012 Posts: 118 | Tammy, Thank goodness he'll be better soon.
Bette/CG to husband Reggie 66
dx 1: SCC Soft Palate (12/06)
tx: chemo and rad
dx 2: SCC 6 cm tum rt. vocal chord (12/09)
tx: total laryngectomy with stoma, 2 nodes
dx 3: SCC 4 cm tum BOT (10/16/12)
Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Tammy,
I'm so sorry that you've had to go through this. You are an excellent caregiver in getting right on top of things.
It's so hard to have these setbacks. Mine have been nowhere near as serious as Kris', They are very disheartening.
I will hold you and Kris in my thoughts and know that we are here for you.
Love,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | OP "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Thank you all for your kind words and thoughts.
Today Kris has turned the corner and is feeling much better. Both the calcium and creatinine have returned to normal. Now we just have to monitor bloodwork closely. This will be lifelong. His incidental chest xrays have been normal, so NO tumours in the lungs. He will be in hospital for a couple of more days to see what way the calcium is trending. I am looking forward to getting him home.
Bette - I will be thinking of you and your Reggie this week.Look after yourself too.
Kerri - I appreciate your response in what I know is a difficult time for you too. May your journey from now on only be upwards .
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | So glad he's feeling better. The named cocktail diet sometimes has to be tweaked as you well know. Hugs and love and so glad his chest is clear.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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