| Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | HI there.. someone else answered for me so that's great. Best of luck with it. I do offer you many prayers. hugs and luck too.
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: Jan 2011 Posts: 168 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2011 Posts: 168 | I am sorry to hear this. I hope the docs get on top of it and that your brother gets the treatment he needs. I'll be sending healing thoughts your brother's way. -Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I havent seen any update. Hope things are coming along. Did they ever test for Epstein Barr virus? Which is common caruse of nasopharyngeal cancer.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2013 Posts: 10 Member | OP Member Joined: Jan 2013 Posts: 10 | Thank you all for Prayers.
Treatment seems helping. We are seeing 10% improvement in his headache. I met his Radiologist, he is cautiously optimistic. H said though this is highly unfortunate, they know where it is and it is contained in one place. So if luck favors us, we could expect positive out come. His left eye ptosis has aalleviated a bit too. But no great progress yet.
I plan to see their HOD tomorrow. There are 4 more RTs left, what should we expect after that? My brother is taking TB meds too, it seems he has contracted TB post treatments.
I hope his headache goes away with that lesion and recover very fast. Drs don't give good pain meds here. He is taking diclofenac+ paracetamol for HA and Xanax .5mg 1 tab for sleep. That is not much for his level of pain+ insomnia+ anxiety. Thank you for Your prayers and help.
DX: SCC of Ca Palate 9/12, Biopsy and MRI 9/12 PET 9/12 : SCC of soft palate, 2 lymph nodes with mild SUV. TX: Cispaltin weekly for 6 weeks, RT: 33 days 9/12 to 10/12. PET 1/13: 2 residual lymph nodes.02/06/13 MRND,0/21 metastatic,some nodes were consistent with TB. AKT initiated
| | | | 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 | Since there are only 4 more rad treatments left that would explain why there are so many issues happening right now. The next 3 weeks will be very difficult. Rads are cumulative and they build up even after the treatments have ended.
The one thing that can be controlled is good nutrition and hydration. By taking in every single day (for at least the next year) a minimum of 2500 calories and 48 oz of water it will help him to get thru this and to recover. I would ask about getting hydrated in the chemo lab, it will make a huge difference!
Take some time to read thru posts and you will find all the answers to your "whats next" questions. Things like thick ropey mucous will hang around for a couple weeks to be replaced by dry mouth. At this point you probably dont want to get too far ahead of yourself with whats happening next. Focus on what is happening right now and push that nutrition, fluids and pain meds.
Ive never even heard of those pain meds. No wonder he is feeling awful!!! At that point when I was going thru tx I was on 150 mg fentanyl patches. Sometimes the caregiver needs to put on their "nurse hat from heck" and be a squeaky wheel until they get some action. Nobody should be in pain like that!!!! There have been studies done showing how detrimental it is to the patient to be hurting. They will do so much better when they arent in pain. If you need me to find the study and post it for you to print out I will, just say the word. Tell those doctors that they MUST do something to help him handle the pain. It really is inhumane for his doctors to allow him to suffer. This really ticks me off when I hear of an OC patient suffering in pain when those doctors have no clue how bad it can be and they have the capability to change that but they dont. GGGRRRRR!!!! Speak up and tell them he needs the fentanyl patch and he should be starting out with a 50 mg and if that doesnt work they need to move it up to 100mg. It takes 24 hours to kick in so if you get some action tomorrow he could be feeling better on Tuesday. Do not take NO for an answer.
Good luck!!!!! 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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Oh PMB you poor thing! Ask for a referral to a pain management team/specialist - diclofenac and paracetamol are not even close to good enough! For the US readers this is Voltaren and Tylenol. The treatment for TB interacts with a lot of other medications and it sounds a lot like your doctor is not confident enough to prescribe serious pain killers when your brother is also on TB medication. I agree with Christine, now is the time to make a fuss. Your brother should not be allowed to go through this on the most basic of pain medications and you need impress upon the doctor that current medications are not adequate. And don't let your brother underplay the pain he is in. Try and get him to agree that on this occasion, when he gets in front of the doctor, he should not be "brave". I remember after a hour of discussion at home with my Alex, we agreed that his pain was severe enough to warrant a request to escalate his pain medication to the next level. When the doctor asked how he was managing he replied that he could handle it... aarrggghhh! I have come to the conclusion that this is something that men do, for no reason that I understand other than pain tolerance appears to be attached to sense of worth somehow Is it possible your brother thinks that to admit to pain is a sign of weakness or failure? If so, maybe it would help if you reassure him that others in his position need something opiate based to even touch the pain. Some possible options to ask the doctor about are fentanyl, oxycodone, or morphine to see if any of these are available ?
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Jan 2013 Posts: 10 Member | OP Member Joined: Jan 2013 Posts: 10 | They have agreed to add Tramadol 100 mg BID. They want to reserve Morphine for later stages.
I was devastated when his rad oncologist told me that prognosis is not very good for such type of early recurrence. They are not giving any Chemo right now, at the end of the treatment they may refer us to an Oncologist. He is loosing vision in his left eye too. Everything from his left eye seems so hazy. So he may loose his left eye. He is already struggling with left eye ptosis and severe headache on left side. | | |
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