| Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | My mom took treatment No. 2 of Carboplatin/Docetaxel and its taking a toll on her. The Mucus is so thick that she cant swallow anything. Looks like I'm going to bring her to get IV fluids again. That seems to pick her up after she takes a treatment. I thought she was going to do well with this treatment. I guess it gets worse each time. So this means she's back to no eating or drinking again which is not good.
My mom has a open wound on her neck that just will not heel. It seems to be getting bigger. I have a wound care nurse coming to the house to pack it. Doctor says the only thing we can hope for is that the cancer responds to treatment then hopefully her skin will heal. Its very painful. Doctor said it's caused from a ulcerating tumor. It really looks terrible. Has anyone had anything like this before ?
I wish my mom would get better. I hate seeing her like this.
Another sleepless night Heidi
Last edited by sweetpe1; 02-15-2015 02:09 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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Heidi, I'm sorry your mom is having a hard time with the chemo. Unfortunately, the effects of chemo are cumulative and she may feel even worse with the upcoming sessions. Do talk to your doctors about what you can do to alleviate the effects of some of the side effects so that you know ahead of time what to expect and how you can help her. My thoughts are with you and your mom.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Thanks so much
I have a home health nurse coming to the house and she said she does wound care to, but I think I am going to look for a better qualified nurse to handle this. She doesn't impress me at all . would anybody know if there is a certain type of nurse I should request . Someone who is experienced with this type of wound. Its not like a Diabetic wound that will eventually heel. This is cause from the cancer in the tissue of my moms cheek and neck. I don't think it will heel anytime soon. There is some leakage from the wound also.
I am so upset for my mother. She ask me "What did I do to deserve this" . I just don't know what to say sometime.
Thanks Heidi
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | When John had a problem with the insertion site of his PEG, he was referred to a stomatologist, who turned out to be a nurse who specialized in managing wounds. Maybe that is what you are looking for? We only saw her once at the hospital. She gave us some advice and it worked and that was it.
Last edited by gmcraft; 02-16-2015 07:47 AM.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | I'm sad to hear that your mother is struggling again, Heidi. It seems very unfair that anyone should have to go through such painful and uncomfortable processes. I keep harping on this in all my posts: counselling, psychological help. Is there anyone giving you and you mother that sort of assistance?
You are both in my thoughts. Love Maureen
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Thanks Maureen
My moms been admitted into to hospital today . After this treatment the mucus became so thick that she could not swallow anything . She needs some IV fluids to help her feel better . A stoma wound care nurse is being called in to help with the open wound on her neck . It's getting bigger by the day. The leakage from it is like a faucet dripping . It's just aweful and very painful . I have never in my life seen anything like this before .
I'm glad she was admitted . It will give me a little break for a few days .
Thanks gmcraft for the advice on the stoma nurse. I mentioned it to the doctor and a stomatologist is being called in .
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Im so very sorry to hear about your mothers issues. I may not always comment on your posts but I do read every single one. Being in the hospital is a good place for her if she is so sick. Hopefully she will turn around soon and feel a little better. The IV will help perk her up.
Hang in there! 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: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Thanks Christine
Yes the IV fluids seem to help a lot . Even though she has the feeding tube it still brings her down when she stops eating and drinking. She wasn't eating or drinking much . just a few sips and a couple of spoons at a time , but when that stops she seems to go down hill. Hopefully the IV fluids will pick her up and the special wound care nurse can get this open wound under control also.
Thanks for your help Heidi
Last edited by sweetpe1; 02-17-2015 02:32 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: 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 | Sweetpe, unfortunately by not eating or drinking, nothing much can be done other than some IV fluids to keep her alive. She is going down because the body cannot continue fighting the cancer and chemo. At some point, the doctors will run out of options.
Have you considered having a professional sit down with your mother and have her state what her wishes are in this battle? When a person refuses to eat and drink, knowing it is prolonging the agony and causing not only imminent death, but unconscionable and gruesome suffering, it's important to understand her motives. Without a strong will to live and a desire to go all in at this stage, all the medical care in the world cannot change the outcome. Is it her desire to suffer like this?
This may sound cruel but it is reality at this point. Your mother's desires outweigh everyone, as painful as it may be for loved ones. We all deserve respect and dignity and to have our wishes honored. Please consider taking the steps to get your mother more involved in extending her life or accepting her decision. Even a healthy person can't continue living without food and water. The "rejuvenation" we see from IV fluids is often because the brain is dehydrated and the replenishment only lasts as long as it takes the body to need more.
I am truly sorry things have been so difficult.
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: 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 | Sweet... sorry your mom is suffering. Cancer is brutal in that it can steal everything.
Your mom's wound likely isn't healing for a few reasons -firstly and foremost - the cancer is still there and likely in situ - the dr. is right. hopefully chemo will begin to shrink the tumor, and this will allow the hole to heal but it will be a long slow process. Also from a health stand point your mom is very fragile. Nutrition is the building blocks of healing - protein/iron - help her gain strength, but persistent cancer steals her nutrition to continue it's growth cycle. (this is why many cancer patients are so very thin at the end of their life) Also because her nutrition (strength) is being stolen - it is hard for her body to muster the strength to heal. It's so busy fighting the cancer and keeping all of her basic functions going.
I'm just trying to explain the process to you. This is all ultimately why her wound is not healing. The best they can do is pack it keep it clean and make sure it doesn't become infected, and hope the chemo will help.
Hugs and blessings to you and your mom.
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: Oct 2014 Posts: 41 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2014 Posts: 41 | Heidi Im sorry to hear your mother had a bad reaction to the chemo. It is so difficult to see someone go through this. As I've mentioned, our scenarios are quite similar. Maybe she can build her strength up again and try another option. You mentioned Erbitux before....is that still an option? Also, keep pushing for clinical trials or other options if that is what yor mother wants of course. It's all up to her. Make sure to take care of yourself too. I hope moms doing better!!!
Caregiver to father DX:4/14 Surgery:5/14 resection, ND TX: 33 IMRT complete 9/14 Scan: 10/14, suspicious area tongue & neck. Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue. 11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND 12/14: debridement surgery, small area removed for clear margins 12/14: biopsy positive for SCC dermal metastasis 1/15: chemo: erbitux, taxol and carboplatin 3/15: 5FU, Erbitux 8/15: enrolled in PD-1 Immunotherapy 9/15: Heaven got a new angel <3
| | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Thanks ConcernedDaughter
Seems like after a week in the hospital mom seems to be feeling a little better. Getting IV fluids and special wound care helped her a lot. Every time she takes a treatment she gets severe Mucositis. She also gets some swelling and it stops her from swallowing.
She is now back eating soups and straw sipping. She will take another treatment next week. I think the doctor said after this third treatment of Carbo/Doctaxel he will take a scan to see if there is any good results. If the results are not good we will not waste time to move on to something else.
I wont let my mom give up . I told my mom It aint over till the fat lady sings.
Heidi
Last edited by sweetpe1; 02-24-2015 10:43 PM.
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: 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 | How is she doing now? 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: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Hi Cheryld
My mom gets good days and bad days. The IV fluids seem to help her a lot after she takes a treatment.
At this point I am worried about the open wound on her neck. The only way this wound will heal some is for the chemo to work. Its called a Ulcerating cancer wound. The doctors are looking into what the next treatment will be. Possible Electro chemotherapy.
Heidi
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: Oct 2014 Posts: 41 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2014 Posts: 41 | Hi Heidi How are you and your mom doing? Any update on the next steps? I read a lot about electro chemotherapy and it's had some great results, especially in the UK. It is considered palliative although I'm not sure why. It has quite a high success rate. Maybe it's to keep cancer at bay? Not sure. If you learn about it please let me know. I've been meaning to ask my dads MO about it just to have in the back burner just in case but I don't want to cause anxiety in my dad by talking about other treatments. Last week our hospital sent the original rumors out for research to see which treatments and drugs it may respond to. Is this something your hospital offers? Might be worth asking about. I'm hoping your mom is doing well. You mentioned a scan...has that happened yet? Hope things are stable! My dad had a break from chemo last week because his rash was so bad he was placed on antibiotics but they say an Erbitux rash is good news so can't be disappointed there. His counts were starting to drop so they said skip a week until they go up and his rash can get better. Prayers and well wishes for you and your mom!
Caregiver to father DX:4/14 Surgery:5/14 resection, ND TX: 33 IMRT complete 9/14 Scan: 10/14, suspicious area tongue & neck. Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue. 11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND 12/14: debridement surgery, small area removed for clear margins 12/14: biopsy positive for SCC dermal metastasis 1/15: chemo: erbitux, taxol and carboplatin 3/15: 5FU, Erbitux 8/15: enrolled in PD-1 Immunotherapy 9/15: Heaven got a new angel <3
| | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Hi ConcerenedDaughter
My mom took her third treatment of Carbo/Taxel a week ago. A scan is being scheduled before the forth treatment to see if its working. No sense to waste time if its not working and move on to something else. Another appointment is scheduled at MDA on March 25. I'm not sure if my mother is going to keep this appt. She may be to sick to make the trip.
New problems and I don't like what I see. This open wound rite below her jaw is as round as quarter. This is caused from the cancer. This may sound gross but what's happening now is what ever drink she sips on we are seeing on the bandage on the wound. I'm totally in shock by this. What is happening here. This is not good. I bring her to the doctor and were told there is a communication problem. I'm like Ooook. What do you mean a communication problem. Well I think the doctor just didn't want to explain what is really going on here. I think the cancer may have spread to the esophagus . I just don't know. Were could this leakage of her food and drink be coming from that some of it is going trough her neck. This is weird and serious.
We have an appt. with a special wound care doctor in the morning. I will see what his opinion is. I'm getting really worried now. This is not good at all.
Prayers Heidi
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Your mother sounds very sick indeed Heidi. I'm so sorry to hear this and hope the wound control doctor can help you tomorrow.
Love Maureen
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | 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 | Heidi, you really need a sit down with the care team, including a social worker or Oncology Psychiatrist. With all that is going on you must not accept a "communication problem". This usually means someone is communicating from one side or another and the other side isn't engaging in the discussion. I hate what,you and your mother are going through. I cannot imagine how difficult this must be for you and your mother, but not resolving this communication is only postponing things that need clarification. Demand a conference call with the care team if you can't make it to MDA.
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) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Uptown
The oncologist didn't mean a communication problem between any conversation such as understanding each other. When I explained what was happening with this open wound he briefly examined my mother and said you have a communication problem going on here. I asked what do you mean and he repeated she has a communication problem. Well I ask Is something in her throat not working properly ? I don't understand. He didn't give me an explanation. I called today and talked to his nurse she is suppose to call me in the morning to explain what he is talking about. I asked her did he mean the cancer is causing this and she says oh no not at all. Well I say what does he mean and it needs to be addressed. I will get this straight in the morning for sure.
Egan Home Health has been coming to the house for home health and wound care but I am not satisfied at all with the services. In the past four weeks the nurses haven't even come with any wound care products. Not even as much as a piece of gauze or band aid. I was being told supplies were ordered over and over. I was going out and buying what I could but I'm sure it was not the correct materials that should be used. I called and canceled there service.
This morning my mom met with a very good wound care specialist. He is recommending Hyperbaric Oxygen treatments. I know it may not be good as far as the cancer goes but the specialist said "Its 6 in one hand and half a dozen in the other" at this point. She just cannot stay in this condition. This wound care doctor is going to speak to Oncologist and discuss what he recommends. The wound care doctor is also making arrangements for a new Home Health company to come to the house.
A scan is also being scheduled to see if there is any success with the treatments. If not then there is no sense in going any further with this route . Hopefully MDA will recommend what treatment if anything can be done. MDA did say if she shows any progress with the current treatment then she may be able to do a clinical trial going on but she must show a sign of the cancer responding before that can happen.
Thanks Heidi
Last edited by sweetpe1; 03-09-2015 08:56 PM.
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Heidi and Uptown I now think I can see what the doctor meant by a communication problem. But he should have explained it! I remember a young surgeon who helped with my surgery saying that he didn't want any "communication" between the inside of my mouth and the outside. He was referring to the stitches I had on my chin. There were some in the skin on the outside and I assume some in the mucosa on the inside. I was begging for a drink but he said the drink could interfere with the healing of the wound and cause a hole in my chin wound.
Hard to believe a doctor would not explain that, however, and I agree with Uptown that there needs to be a family conference with doctors, caregiver, nurses so that things are a lot clearer.
So glad the wound specialist has suggested something that might help and that you have a new nursing service to help you, Heidi.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Yes Alpaca my mom is very sick .
I'm thinking it may be something to do with her swallowing. She is complaining of swelling in the back of her tongue and throat. When she tries to swallow she kinda throws her head to the side to get it to go down. Maybe its something going on with the pharynx or larynx area. I just don't know. The wound is below her chin. It is not a hole that is open clear through her jaw. My daughter looked with a lite and cannot see through and through. What ever I happening I believe its in the passage that leads to the stomach. Its not all of what she swallows but just a little is coming through the wrong way and landing on the wound dressing. But I can assure you I will have some answers in the morning. What ever is happening it has to be addressed.
Thank you so much for your help Heidi
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: 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 | When you have the doctor in the room, shuffle towards the door and say you need some questions addressed. There is no excuse in leaving you dangling like that. Can you email the nurse? I used to do that to keep the dialogue going.
It sounds like there is a fissure or some kind of hole from the floor of the mouth surgery. That would explain the drink leaching out. What Alpaca is saying makes a lot of sense.
I am really sorry for what your mother and you have had to endure. It sounds horrific.
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: 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 | It definitely sounds like a fissure. You may not be able to see through the hole but tissue swells and usually this makes it look like there is no hole where there might be a small opening that enlarges at the weight of the liquid or just drips through. I agree with everyone here you need clarification. HBO sounds good and I know you know the risks. Fissures are very hard to heal unfortunately and worse they are open to infection. Hopefully they will get things sorted out for you and you will get answers.
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: 6 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: 6 | As far as I understand, HBO is not for patients who currently have cancer. Its to be used for healing. Cancer loves oxygen and HBO would make the cancer grow even more. Its not a good plan at all!!!! BE CAREFUL!!!! HBO (main OCF pages) 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: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Thank you all for the advise
I was reading about HBO and cancer and its not good. I just don't know what else can be done to heal this wound. Its getting bigger and its very deep. I explained to my mom this morning that its very risky. I'm sure the oncologist will not advise her to do the HBO. I guess the doctors will have a meeting to discuss some kind of a plan.
Thanks Heidi
Last edited by sweetpe1; 03-10-2015 10:24 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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | I think this is a Fistula, which is just a tract from one site to another . In your Mums case it goes from somewhere in her neck to the outside skin. But fistulas can be anywhere. Personally, I would not be doing HBO while she still has active cancer. Do discuss this with her oncologist before embarking on this course of action. Thinking of you both, 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: 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'm sorry for the continued troubles. Besides being ulcerative, a fistula, it sounds like it's possibly from a Fungating wound (cancer). Here is a link which may help with some info, possible treatment. http://www.macmillan.org.uk/informa...other-side-effects/fungating-wounds.html
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: 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 | From what I know of cancer - there are two kinds.. the kind that thrives in a hypoxic environment (lack of O2) and those that don't. I know HBO has it's risks. Ideally push for a team meeting where everyone including a wound specialist will have their say. 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: 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've seen reports that say HBOT doesn't cause or promote cancer, but it has been suggested previously that it's possible through angiogenesis. Even still, my current doctors waited until I was clear of cancer by scan, after 6 months, to do HBOT treatments. On another note, I also had HBOT several years ago, 3 months after radiation, no scan yet then, and had a recurrence a month later, coincidently or not. There have been other studies with HBOT with chemo, which showed some treatment promise when added, but maybe not so with radiation, so there may be contradictions with this, and others, for this type of treatment, so as suggested, see what the doctors say.
Good luck with everything.
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: Feb 2014 Posts: 24 "OCF Canuck" Member | "OCF Canuck" Member Joined: Feb 2014 Posts: 24 | Sweetpe My husband is on the same track as your mom. December we were told the cancer is back in the cheek and in the lymph nodes in his chest. they said he is terminal. They said no more treatment just chemo which is palliative. My husband did not want any more treatment and since we have 5 year old daughter ... he said he would rather travel and enjoy life. We went to disney at the end of December and it was awesome. We got back early january and he started chemo in February. Carbo?taxel. The first round was difficult and he lost 10lbs. The second treatment happened a few weeks ago and it was better. We get the results of the scan on Wednesday.
But he has this open wound on his face. It started late january like a pimpel that popped and kept oozing fluid. The hole got bigger and bigger and there is a lot of tunneling. We kept showing doctors and they said its the cancer ... nothing can be done. Then about on March 10 the home care nurse came and said its infected and that we had to go to emergency right away. He is now on IV antibiotics and he is misrable. He is stressed that the wound wont get better and just wants to give up and Die.
its so stressful being a caregiver and seeing your loved one go through so much. Any advise that you can provide will help because I know we are travelling the same path. zahra
Caregiver to Husband Hubby Age 43 Was diagonosed with Buccual Muccusa Squomous Cell Carcinoma on Feb 13, 2014 T2 N2(not 100% sure if they are malignant) Stage 2 or 3 Not sure bc of Nodes Surgery took place on March 17. They removed the tumor with 2 mm margins. Flap from left arm inserted into Cheek. Skin graft from left thigh to put on donor site. 37 nodes removed. 3 at level 1 malignant.
| | | | Joined: Apr 2014 Posts: 236 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2014 Posts: 236 | Hi Zahra
I'm so sorry your husband is going through this. He is so young. This cancer is so brutal for anyone to endure.
Yes it does sound like my mom and your husbands case are similar. My moms wound also started out like a pimple and grew bigger and bigger. My moms wound in located on her left side of her neck. It's now about the size of a half dollar coin and has grew very deep tunneling into her throat. My moms wound has so much leakage that she uses at least 3 bath towels a day around her neck so her cloths don't get wet. The doctor said its lymp fluid. It looks like water just dripping from the wound. Its is just terrible.
The doctors all along have told us that its the cancer causing the wound and as long as the cancer is there it will not heal. The Oncologist referred my mom to a Wound Care Specialist. This Specialist recommended the Hypobaric Oxygen Treatment even though my mom has the cancer. He said it was never proven that Hyperbaric Treatment spreads the cancer. Its has only been a theory of thinking. This Specialist said he has treated many cancer patients and the outcome was very good. He said it relieved the pain and healed the wound. Of course we are still scared of the outcome but on the other hand my mom could not live with this any longer. Her Quality of life is just horrible right now.
My moms doctors 4 of them had a meeting and decided recommending the Hyperbaric . These doctors said it will not interfere with the Chemo Treatments working at all.
My mom is taking a Chemo combination recommended from MD Anderson Cancer Center. It's Carboplatin and Docetaxel . She took 3 treatments and then a scan was taken to see if it was working and yes her cancer is shrinking. She is scheduled to take 6 more rounds for a total of 9 treatments. If she can handle it of course.
If I can be of any help in any way don't hesitate to ask. I will be happy to let you know how this goes.
Thanks Heidi
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
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