#33891 03-01-2005 07:47 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hello Cindy,
I can't offer any better advice on the feeding tube than the above postings. I can offer my support for both you and your Mom. Being a caregiver takes a special person. I think you are one of them. Remember to take time for yourself as well. As stressful as it is you will need to have a clear mind to absorb all you will need to know.
Best Wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#33892 03-01-2005 09:59 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Stephany,
I've been away most of the day and have to leave again soon to take my granddaughter to her session at The Caring Place, but I will post a reply this evening. I may also send you a private email.
Briefly, though, please don't worry too much about your mom's airway being blocked. If she starts to have trouble breathing, she can have a tracheotomy done for relief.
Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#33893 03-01-2005 10:06 AM | Joined: Apr 2003 Posts: 33 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2003 Posts: 33 | I am a male and had a feeding tube (PEG) in my stomach one week prior to Treatment. I did not want them to put it in until at least my third week of radiation...However, they would not let me start until I got the PEG tube. I don't know how I would have made it without it, as I was too sore to drink water the end of my 2nd week. I am amazed at those who got thru without it, but have observed that most are usually very large guys with a lot of weight to lose anyway. It is no picnic, but getting it after treatment could be tougher.
good luck,
Weldon
SCC-Base of tongue, Stage IV, Rad with 3 chemo treatments. Clear for 2.5 years | | |
#33894 03-01-2005 12:01 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Well I wasn't a large guy, at 5'6" and 169 lbs going into it. I dropped to 109 lbs after treatment was over. I did it without a PEG, but it was VERY difficult so I am not advocating this. I am happy with my new weight of 145 lbs. It wasn't the weight loss that was the problem - it was the atrophy of all of my muscles and the time required to get upper and lower body strength back to an acceptable level. We can all stand to loss the fat.
Congrats on 2 1/2 years Weldon - I'm right behind you.
Stephany - they can increase the (Fentanyl AKA Duragesic) patches to 300 mg if necessary.
Iressa may be worth trying - it is supposed to have few toxic effects as it targets the EGFR in the tumor cells themselves. Please note that only 10% of people who take Iressa have any response but those that do have had rather dramatic responses. Total cure in some cases.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#33895 03-01-2005 03:11 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2002 Posts: 541 | Me too was just a medium-sized woman at 5'4" and 116 lbs when treatment started. Eating became very painful when I was in the middle of treatment. The doctor suggested a nose feeding tube when I lost 10 lbs in a week but I was scared of the idea of getting a tube through my nose. If the PEG tube had been an option then, I might have thought of getting one. Yet I am very happy that it wasn't an option because it turned out that I could make through the whole treatment without any feeding tube. The doctor prescribed some medicine that numbed my mouth before I took my meals and it did well to reduce my pain. I managed to eat 3 meals a day ( mostly congee and milk and icecream) and was discharged from the hospital when my weight became stable. I totally lost 16lbs and gained back my lost weight in 6 months' time. So I would think that the use of feeding tube has nothing to do with the size of a person since in Hong Kong most people are of a smaller size as compared with the westerners but only 25% of patients need a feeding tube during their cancer treatment.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#33896 03-01-2005 06:34 PM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2004 Posts: 155 | CINDY Hi I can so relate to your frustration. My husband Bob finished treatment in October, he was as stubborn as they come when it came to any suggestions from me. I gathered a ton of support and information from this board and tried my best to stay one step ahead of what might be coming next, so I could somewhat be prepared. Thank God I did. He fought me on pain management because his nurses hadn't discussed it,(when they asked how he was he was always politely said fine so of course they didn't know how much pain he was in) he fought me on the constipation meds until he was completely miserable, he even had issue with the humidifier. He definitely wouldn't even look at this board. He did listen halfheartedly when I recieved emails from members of the board. I was so afraid to nag at him, I was terrified to upset him. Regardless, in some instances like the pain management issue I flat out told him I was calling the treatment center myself, and I did. I bought the senecot and put it by the sink with a note, and got the humidifier and set it up after he went to sleep, made him shakes from the info on the board and just brought them to him. It wasn't easy and at times he wasn't very nice. In hindsight he now realizes that without the information and support we got here we probably wouldn't have made it through intact. Now he actually denies being difficult about things. But I know better and he is on the mend so it was worth it. BE BRAVE, DO WHAT YOU FEEL IN YOUR GUT IS RIGHT, even if it means you call the Dr yourself AND KEEP COMIN HERE. I couldn't have done it without this community. Denise
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04 Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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#33897 03-01-2005 07:46 PM | Joined: Feb 2005 Posts: 663 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2005 Posts: 663 | Denise,
Are we married to the same guy or is the selection just that narrow? LOL
I plug away at him and sometimes I even get things my way. But I know that someday he will understand that I wasn't here just to piss him off. :-)
Thanks for your post... it sounded so familiar.
Cindy
Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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#33898 03-01-2005 07:59 PM | Joined: Jan 2004 Posts: 134 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2004 Posts: 134 | It is so nice to hear that people made it through this without and with a PEG tube ok. But, my mom had the surgery yesterday and started feeding today and the nurse in the hospital today showed me how to use it...But you are NEVER GOING TO BELIEVE WHAT HAPPENED TODAY. Early this morning before me and my dad arrived at the hospital, the doctor did NOT read my mother's chart and my mom had already doubled up on pain patches and the doctor prescribed yet another double dose...My moms blood pressure dropped and she stopped breathing..When the nurse FINALLY MADE HER ROUNDS, she saw my mother was blue and was able to save her..Now she is on monitors...I just arrived home at 10:30 and feel ok to have left her and I will return early in the morning....I almost lost my mother today...it is so hard..Right now, she looks weak, only 110 pounds and is suppose to get out of the hospital soon.....I am suffering so bad watching her suffer. I want so badly to make it all better for her, but I cant. She thought she was going to die today and wrote my dad a note to that effect. It was just awful... But thank God, I have my mother still, for how long, I do not know...But I love her dearly and will cherish the time I have left with her....When she gets home, I will look into getting home care for her.....I am so thankful for this forum here to help me through this..Thanks again to you all..My friends Stephany
Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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#33899 03-02-2005 02:57 AM | Joined: Feb 2005 Posts: 663 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2005 Posts: 663 | And my husband wonders why I micro manage his meds.
Stephany, you hold strong. You can do it and the nutrition that your mother will be able to get from this will make a marked difference. It is an amazing thing to see how a body can perk up when it has enough food and water.
I am so sorry that any of us have to go through this. It is so day to day and since I have lived mostly planning and talking about next week and next year it has been a difficult adjustment.
We are here whenever you need us Stephany. I cannot always promise that I will be emotionally stable :-) but I will be here. I agree that this place is a sanity saver for sure.
I have a little piece of good news today. They gave Harry his Cisplatin yesterday and we anxiously waited in anticipation of the sickness that followed last time. It only took 12 hours last month. But today, almost 24 hours later, he is doing fine. No nausea, no vomitting, and he is very happy. I cannot begin to say what a relief it is that so far the docs have been able to keep him from getting sick.
Doesn't mean he won't be sick tomorrow, but it is good today and that we celebrate.
Tell your mom to hang tough. Once she gets the nutrition in her that she needs she will feel much better. You are a strong person and you have her genes so I would guess that she is a pretty tough lady herself.
Hang in there and let us know how you are doing when you can.
Cindy
Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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#33900 03-02-2005 05:47 AM | Joined: Jan 2004 Posts: 134 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jan 2004 Posts: 134 | CIndy,
On my way to the hospital...Only have a second here..Thanks for your message. :-) And I am so happy to hear you are having a good day with your hubby. That is awesome..Hopefully, many more will follow and he will not get sick again....I will keep you and your family in my prayers...On my way to the hospital
Thanks again Stephany
Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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