| Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I am so sorry to hear the news, Cheri. It always takes me back to that exact moment when I hear such news.
What you both are experiencing will pass once there is some sort of order and routine established. There will be a lot of activity for a while. Just keep focused on the care and above all, remember many of us have been down the path ahead of you guys and we are here to help.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Aug 2014 Posts: 23 Member | Member Joined: Aug 2014 Posts: 23 | So sorry for your bad news. It wasn't that long ago we were going through the same thing. Sleepless nights, worrying, waiting for appointments. Hang in there. It gets better. There is a lot of good information in the forums here, and a lot of support from people who have been through it.
Do your best to take care of both of you! Hugs & best wishes.
Caregiver to husband with SCC BOT HPV+ T4N2cMO stage 4a CT scan 7/23/14 Biopsy 8/7/14 PEG tube in 8/15/14, out 4/2015 35 rads, Cisplatin X 3 - finished 10/27/15 cancer free May 2018
| | | | Joined: Oct 2014 Posts: 12 Member | OP Member Joined: Oct 2014 Posts: 12 | Thank you Uptown and Gracie mars. May I ask...how much time away from work have you had to experience?
Cheri-43 year old caregiver 51 year old husband with BOT Cancer, SCC, HPV16, enlarged lymph node at the neck, non-smoker, healthy and fit ENT Appt 10-9-14 Biopsy 10-13-14, Results of Cancer 10-16-14, 1.8x2.2cm left side lymph node 1st Medical Oncologist appt 10-21-14, learned Stage 3 or early 4, T3N1Mx 1st Radiology Oncologist appt 10-30-14 PET Scan 10-27-14 1st weekly Erbitux chemo 11-12-14 PEG tube surgery 11-13-14 1st of 30 IMRT Radiation Treatments 66 gy 11-25-14 | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | I think that's dependent on how well your hubby takes the treatment. Caretakers may need to be around from week 4-9 (I know his treatment will run for 6.5 to 7 weeks but the two weeks following radiation are actually worse. If he stays well hydrated and maintain his weight within reasonable standards, he may need 2-3 months off - likely from week 3-4 until he's feeling okay - possibly a month after treatment has finished (I'm being optimistic here) some people manage to work through it is they are independent workers and can do desk type work at home at their own pace. Mostly the person feels tired if they have trouble with chemo there may be varying degrees of nausea. There is also the potential for skin burns on his neck etc.... So that's a difficult question. I drove myself daily to treatment but not everyone can. I was very blessed that even though it was horrible. I was okay. Hugs and best of luck,
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: Sep 2014 Posts: 87 Likes: 2 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2014 Posts: 87 Likes: 2 | Sorry to hear about the diagnosis. In my own experience, the sleepless nights and worry lessened with time. Once I had the diagnosis, my mind switched over from worry to just simply trusting the doctors, nurses & other staff at the cancer center & believing that they're professionals & will do the best they can to fix me up. Once I resigned myself to the fact that there's really no benefit to me worrying about it, there's nothing I can personally do about it now, and that the only people that will make it better are already doing what they can, I started being able to sleep again. I was reasonably lucky to get my treatment fairly quickly.
As business owners, I suppose you'll feel the need to get back to it as quickly as possible. I'm just a regular old grunt working for someone else, but was lucky enough to have a fairly substantial short term disability coverage at work, and was off for a bit under four months with pay. How long your husband will be out of commission will probably depend on what they end up doing with him in terms of treatment.
Dx 2014Jan29 (42 yr old otherwise fit nonsmoker) SCC tongue stage III T3N0M0 subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital RAD 25 zaps 2014May5-2014Jun9 Back to work, paddling & hiking shortly afterwards
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Cheri, my circumstances were so strange and I doubt if anyone would ever be able to duplicate it. I was working from home with daily conference calls even while having chemo. I lost my voice the last 2 weeks of radiation and stopped working but I was able to go back in 7 weeks. It was much too early and I ended up staying home for about 6 months.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Chrnlar
Sorry to hear the bad news but hang in there. I am my mothers caregiver . She also had ear pain which brought her to the ENT. From there it all began. SCC started in my mothers left lower jaw.
I know the feeling of no sleep. I find myself online all night researching a lot . I asked the Oncologist to prescribe my mother Ativan for the anxiety. It seems to be working well and she rest much better also.
Hang in there and also you will find this forum very helpful to many questions you might have.
Good luck Heidi
Last edited by sweetpe1; 10-18-2014 05:37 AM.
Sweetpe Caregiver RE:My Mother Age 70 Non Smoker SCC 3/4/2014 Left rear jaw Mandiblctmy 3/25/2014 35RAD Completed on 06/03/2014 MRI 9/3/2014 25mm lobulated recurrence left mandible/floor of mouth carcinoma 9/23/14 Salvage Surgery MET(s) 9/23/14 Salvage Surgery Not Successful Chemo Recommended 1st Round of Cisplatin Chemo Started 10/20/14 Cisplatin stopped 11/20/14. Side affects to bad. Chemo started again 1/22/15 Carbo/Docetaxel Passed Away April 22,2015
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Cheri, my husband worked on radiation (but not chemo) days until the last week. He took that off, and half a week following treatment. I drove him when he was on narcotic pain killers. He HATED that ... and went off them cold turkey the week after treatment. He is stubborn. He had to sleep a lot longer than normally during and after treatment. Our schedule included me calling him at work to remind (nag) him to drink his afternoon Ensure. He was lucky in that the Cetuximab chemo did not knock him for too bad of a loop, although it did give him a pretty good rash. I think that walking our old dog everyday helped - got us out, and it was something normal. Best wishes to you both, Maria
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: Oct 2014 Posts: 23 Member | Member Joined: Oct 2014 Posts: 23 | Hi Cheri- I'm only a couple weeks ahead of you and I can still remember the day we heard ..."it's cancer". We had to say it out loud to each other a bunch of times just to make it real. My husband and I did and continue to focus on what we heard from the beginning...." This is going to be difficult, but at the end your looking at a cure" . My husband took off a week after surgery and plans on taking off 3 more weeks at the end of radiation and right after radiation ends. This may be optimistic but that's what we're going with. He's finished day 12 of radiation and still eating and drinking without a feeding tube thanks to the drug combination he's taking. We make the most out of the weekends while he is still feeling okay.
Someone earlier in this thread talked about trusting the doctors, I really struggle with that as his care giver. He goes right along without question. This forum is fabulous but also a bit scary. I'm beginning to understand that everyone has their own journey and although sometimes I'm reading about the worst, I work hard to think the best. Good luck and I'll add you to my prayers!
Maura Working caregiver of husband Don ,56yrs, non smoker, casual drinker 6/14 DX squamous cell carcinoma on base of tongue, HPV positive 8/28 Radical neck dissection w/ removal of 31 lymph nodes and partial pharyngectomy T2 w/ MET to lymph node 8/30 emergency surgery to cauterize bleeders in throat 10/1 Began 1st of 30 tomotherapy 11/14 end of radiation
| | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 188 Likes: 4 | Cheri welcome to OCF. I am sorry you have to be here but it is the right place. Please take this time to educate yourself as well as your husband. Ask questions of all Doctors,Nurses and members on this site. Use the time wisely. Encourage your husband to bulk up and increase exercise for strength. He needs to prepare for a fight. Draw close together and strategize the care. Lean on this group above all. We have been where you are going.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV great team at OSU Tx 6 weeks of rad started June 3 8 weeks of chemo started May 28 RTOG Phase III trial Cetuximab group. Treatment completed 7/16/2013 PET Scan completed 10/08/13 Results discussed 10/11/13 NED - Free but am I Next part of the journey? 1year PET 10/24/14 NED Good reports now 10 years out. | | |
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