| Joined: Jun 2011 Posts: 147 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 147 | Hi. We are now in the single digits. Nine rads left and one chemo. I am in awe of how well my husband is doing. Still swallowing! No pain Meds! Just getting the mouthwash today. We walk every morning and he naps in the afternoon. I know that he has to deal with getting those taste buds back and saliva but he is so determined to heal. He has a trainer/nutritionist lined up when he has the energy to drive back to his gym AND he is talking about a new car. Now that is a good sign. Thank you all for keeping my spirits up too. I am so grateful. So onward and upward.
caregiver for husband diagnosed with oral cancer May 2011 after 6 mo node lft side and several in jaw involved Base of Tongue Stage IVA 7 weeks radiation Cisplatin-3 chemos (beginning,middle,end) IntraV administration
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | How great that your husband is doing so well!! And that his spirits are up too! That really means a lot. I'm sure your excellent care giving is a large part of his success. So kudos to you, too! It is so encouraging to others to see how possible it is for things to go so well. Thanks for posting such a positive update!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | That's really good he's going so well this far into it! If things get tougher, though, make sure that you have pain meds available if he needs them. If he is stubborn like my husbard, you may have to remind him that his first duty is to remain healthy and hydrated enough to complete the protocol as close to schedule as possible. Better to do so without drama (e.g., a hospital admission) even if it means pain meds for a bit. I want to share with you that I did get scared when he couldn't drink water without the BMX - that was at the very end of radiation. The last week of radiation and the week and a half following were the worst as the dose is cumulative AND it takes a few days before it actually hits. This information on the timing of the worse misery helped me tremendously when my husband was treated - I could reassure him and myself about it - yes, it sucks, but it will get better.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Jun 2011 Posts: 147 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 147 | Thanks Maria, we do have pain meds here because he was taking them at the start of the treatment because he had a constant earache when the tumor was pressing on a nerve. When it shrunk he was able to get off. He was taking tylenol constantly before treatment and oxycodone at the beginning because it hurt when he was lying down. He is not on any pain meds now because his ear does not hurt. He says that his throat hurts a bit when he swallows but is not taking the pain meds yet. He is drinking 2 quarts of water per day. I put out 4-6 16 ounce bottles of water and he lines up the empties at the end of the day. He is taking a great deal of water because I have been Nurse Ratchet about water. I do expect that the last week of radiation and the few weeks after the treatment will be the worst. I am prepared. He does not want to talk about it yet and says that he will deal with it when he has to. That is his way of coping. I am just grateful that he has gotten this far in reasonable shape. So if we need to do the pain meds, and I expect we will, then it will become part of our routine again. Congratulations on the clear pet scan this June. I cannot wait for that to happen for us.
caregiver for husband diagnosed with oral cancer May 2011 after 6 mo node lft side and several in jaw involved Base of Tongue Stage IVA 7 weeks radiation Cisplatin-3 chemos (beginning,middle,end) IntraV administration
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 |
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Amazing. He's doing a heckuva lot better than I was at that point. Congrats to you both.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | 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 | And then there were 8. Your husband is doing great!!!! You are a terrific caregiver. I need you to be my caregiver if I ever get this terrible disease again. Lining up the water bottles and and watching that they are drank every single day helps. Im so sorry to say that now is when everything will get more difficult. The last 2 weeks and the first 2 weeks of recovery are the hardest. Thats when I lost my voice.
I love reading your weekly updates! When there is a patient who gets thru it relatively easily, it gives others hope. Its encouraging to read positive things instead of all the scary stories about how hard it is. Thanks for sticking with us and posting.
Keep up the great work!!! 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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Ellen:
It sure is inspiring to read how good your hubby is doing. It's a whole lot better than how I did. I pray that things won't get too bad, and that he'll be able to keep his wonderful attitude throughout his whole treatments, and afterwards - that really helps a lot. Keep us informed on his progress. I'm sure reading this encourages other newcomers and those who are at the stage he is, or just beginning. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Jun 2011 Posts: 147 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 147 | Thanks to all of you. The forum has sustained me through this and offered so much support and great information. As the nurse I am prepared for this to become more difficult for the last treatments and several weeks beyond. I just keep thinking that as bad as it might get, it is part of the road back because he is no longer in treatment. He keeps telling me (since he still has his voice) that he will deal with whatever happens but wants to think positively. That is surely smarter than stressing. That is my job. So we will keep lining up bottles, slugging VHC and trying something new to eat whenever we can. Wish I could hug each of you
caregiver for husband diagnosed with oral cancer May 2011 after 6 mo node lft side and several in jaw involved Base of Tongue Stage IVA 7 weeks radiation Cisplatin-3 chemos (beginning,middle,end) IntraV administration
| | | | Joined: Jun 2011 Posts: 147 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 147 | Christine. You WILL NOT get this dreaded disease again. I wish I could meet you one day just to talk not to be a caregiver. Take good care. Until our next posts
caregiver for husband diagnosed with oral cancer May 2011 after 6 mo node lft side and several in jaw involved Base of Tongue Stage IVA 7 weeks radiation Cisplatin-3 chemos (beginning,middle,end) IntraV administration
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