#43877 09-17-2004 01:50 AM | Joined: Jul 2004 Posts: 3 Member | OP Member Joined: Jul 2004 Posts: 3 | My daughter is in her 5th week of a 7 week round of chemo/radiation for SCC in base of tongue, tonsils, neck lymph nodes.
She is so very ill from the radiation/chemo treatments she couldn't even go for treatments the last couple of days. She has a central line and a feeding tube. The problem is that she continually vomits, due to the phlegm/gagging. She will not swallow anything. Blood in vomit. She has not slept for 2 days and is exhausted. Is there anything that can be done to reduce the amount of phlegm that she is gagging on.
We all feel so helpless. Her husband says that he doesn't want her to finish the treatments for fear that they will kill her. We all know she needs to finish, and she does too, but she just can't handle it.
Any ideas to help her with phlegm & gagging?
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#43878 09-17-2004 04:05 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 261 | It seemed if I could swallow as little of the mucous as possible I was less sick to my stomach. I rinsed, gargled & spit with Schweppes Club Soda continously, went through cases of the stuff. I used the little bottles. Liters would go flat before I could use it up. Seemed to clear the phlegm/mucous temporarily & sooth the throat & mouth. The carbonation is pretty intense, even uncomfortable, but doesn't hurt. The chemo nurses kept telling me to use plain dextromethorphan (Robitussin). It did help, but sometimes it made me sick & I couldn't take it. I broke down & bought my first recliner chair & catnapped upright just to get any sleep at all. It was just a day by day, hour by hour, sometimes minute by minute grind to get through, but she CAN do it! I took lots of antiemetics, anti-nauseau drugs. Lorazepam till it was coming out my ears, but it did help. Others to. Tell everyone about her problems & get some relief. Tell her I did it & so can she. Many, many of us have gone before her & gotten through.
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#43879 09-17-2004 07:08 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Hi,
Erik's suggestions are all good, but even better is a suction device. Call her doctor and ask them to prescribe a Yankauer suction machine. We had a portable one for my daughter. It is similar to the one a dentist uses. If ordered by the doctor, most insurance companies should pay for a rental. Heather had severe trismus and it was the only way we could keep her mouth cleaned out.
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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#43880 09-17-2004 07:45 AM | Joined: Jul 2004 Posts: 3 Member | OP Member Joined: Jul 2004 Posts: 3 | Thanks for the suggestions, Erik & Rose.
Is the blood in her vomit just from the irritation. Also, is it a big deal that she refuses to swallow anything. She just says that the vomiting is easier if it doesn't have to come from way down. She throws up the food from her PEG.
Again, I appreciate any and all responses.
Thanks! | | |
#43881 09-17-2004 10:27 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Masned, Welcome to the site. Sorry you need to be here. Hope we can help. When I was in treatment, especially at the end of radiation, the phlegm was a big problem. Had vomiting and bleeding issues, peg feeding issues, etc. I didn't know enough to try anything to solve the problem. Just dealt with it until it went away. This occurred about the fourth week after the end of rad treatments. Will pray your daughter finds a way to deal with this as it is important for her to finish the treatments.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#43882 09-17-2004 11:18 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Hi, As to the origin of the blood, radiation literally burns the tissues of the mouth and throat, so it could be from that or some could be from irritation caused by the vomiting. What do her doctors say? Throwing up the food from her PEG doesn't sound very good. Is she losing a lot of weight? Is she sitting upright when taking feedings thru the PEG? Using the PEG while laying down can cause nausea. And is she dealing with constipation? That can affect the digestive system big time. If you put constipation in the search field at the top of the page, you will see there have been several discussions on this. It can be a MAJOR problem. As for not swallowing, it's probably not a big deal if it is temporary. But again, have you questioned the docs and what do they say? It sounds like they are not managing her care very well. Have they been made aware of all the problems she is having? You might have to be pushy to get her the help she needs. Some of her problems can be managed with medication. Another suggestion on the phlegm/mucous. Many people have mentioned that they have gone thru mega boxes of Puffs. They are soft enough to not irritate, but strong enough for wiping the mucous from the mouth. At night, sleeping partially upright (in a recliner like Erik suggested) or just propped on pillows if no recliner is available is helpful. And Joanna has suggested rolling gauze and putting it in the gutters of the mouth to soak up some of the mucous while sleeping. Heather did that for awhile and it did seem to help. I do think a suction device is the best solution, but these ideas might help until you can get one. Rainbows & hugs, 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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#43883 09-17-2004 12:57 PM | 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 | Masned,
Be sure and have her sleep with a humidifier close by and it wouldn't hurt to have it going most of the day. It would make sense to have her taking fluids through the central line and maybe even TPN feedings that way until her stomach settles. The problem with vomitting is that it severely dehydrates the body and those fluids have to be replenished or more serious problems will develop. She should try to rinse out the mouth regularly to avoid buildup and acid issues from the vomit. This is the toughest period of the radiation and it will be over in a couple of weeks, albeit long and rough weeks.
The treatments will most likely not kill her but the doctors should be monitoring the blood counts and electrolytes closely (by the day) to get her through this period. Potassium, sodium levels can get too low and this will kill her. Make them monitor blood work every day while she is this sick. They will know what to do. Severe dehydration can lead to deadly results. Push the doctors if they are not monitoring daily.
Ed
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
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#43884 09-17-2004 07:02 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 | Hi masned, most of us had nausea and vomiting difficulties (and sleeping problems as well). I didn't have a PEG so I can't comment on that, but I puked enough to polish my teeth like glass. My wife thought that I was going to die (but I fooled her ;-) Be sure to discuss this with your doctors and nutritionist. Nausea control is an important part of treatment and recovery. There are many different things to try. There are also numerous reasons for the nausea so you just have to keep at the problem. Is she taking antiacids for one? What is she taking for nausea? The nausea drugs are not perfect. They work about 60% of the time, some, like Zofran, are only effective for a few days at a time. You must try different drugs. If she can't keep the pills down then there are Compazine suppositories which worked pretty well for me. You can try slipping an Ativan under the tongue. Is she feeding too fast on the PEG? Allowing some time in the morning for clearing the mucous before eating anything helped for me anyway. Nothing was perfect - I still got sick a lot.
Last month my wife had a bout with nausea which lasted about a week and I understand how helpless one can feel standing by and watching a loved one go through it.
It would be very bad to stop treatment. She should try to complete the treatment if at all possible. I missed a few days myself due to nausea and took trips to the ER because of dehydration. All of the other posters here have very solid points as well so I tried not to duplicate them here.
My throat was pretty burnt from the radiation so I was always hacking red blood or traces of it. If the blood was in the stomach more than likely it would be black from the acid. Hacking some blood traces and small chunks of dead tissue is pretty standard stuff I hate to say.
I would ask the doc for some sleepers as well. Rest, hydration and nutrition are extremely important at this stage of the game.
The treatment protocol is pretty rough but survivable and it will get better in time. It'll probably get a little worse too before it gets better. Hang tough. Demand that the doctors manage these issues better.
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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#43885 09-19-2004 03:51 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | Welcome to the board Masned! My husband, Dan, slept in a recliner for weeks and weeks after about the 6th week of radiation and for weeks after. He had a PEG and didn't eat or drink anything from the mouth for at least 6 weeks. He had some trouble with nausea, but it was controlled with drugs. He was also on major pain killers to get thru. He had 8 weeks of chemo/rad treatments. It was rough even for about 4 weeks afterwards, but then started to get better. It was so very hard to see him go thru all the pain, so hang in there. I know what you are going thru. Your family will be in my prayers. God bless, Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#43886 09-20-2004 01:27 AM | Joined: Jul 2004 Posts: 3 Member | OP Member Joined: Jul 2004 Posts: 3 | Thank you all for your responses. It is so good to have your insight.
Julie, my daughter, is indeed going back to treatment today. One chemo and about 10 rads left. The break helped her much. The weekend was a bit better.
I am blessed to have found this site.
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