My brother just finished treatment
Hello everyone, I'm new to this group, but have been part of the Colorectal group for many years when my husband had colon cancer.
My very healthy and active brother who is 62 years old just finished treatment for tongue cancer, HPV. I don't know the exact details of his diagnosis since he lives in another state and I ahve not seen him since his diagnosis. He did I think 7 weeks of radiation and 6 weeks of chemo once/week. He had a port and peg tube placed before treatment started. He has been using the peg tube since about 3 weeks in to treatment. He has been suffering greatly and after reading many posts in this group, it sounds like it is "normal" They told him it would be 2-3 weeks until he started feeling better. I have seen some of the side effects some of you had and still have. I'm wondering how I could support him from afar. He is sleeping much of the day/night and does not want to talk.
Also, thinking back, he has had allergies his entire life, pretty severe as a child. He's always had a throat clearing problem and I wonder if this was the start of the cancer rearing its ugle head. i also wonder about heredity for this kind of cancer. We have one other male cousin who had this same cancer about 7 years ago, diagnosed in his late 50s. He is doing well now.
When he first started having pain in the back of his mouth, he went to an oral surgeon where they found a piece of a wisdom tooth they removed. He still had issuse so off to an ENT who found nothing. One of his doctors suggested a scan and that's where it was discovered. He had a very good attitude going in, but now is so depleted.
Any advice on things you appreciated people did for you or suggestions for my sister in law who is his main caregiver would be appreciated. He has been getting IV fluids 2/week for several weeks now and probably will continue until he can drink again.
Thank you,
Linda
Comments
-
Linda,
It's tough, and I feel for him and your Sister-in-Law. I've been done for a year, and other than some numbness in my hands and feet (neuropathy), I feel pretty good again.
It's normal for someone who just finished up, to want to get back to being "themself" again - and the good news is that it just takes time.
Tell him to hang in there, and he'll start feeling a little better in just a few weeks!
Good luck to all of you; I wish you the best possible result!
mg
0 -
I will Tell You
It just takes time. He is probably feeling pretty lousy right now and it is a full-time job just keeping enough food going in through the tube and taking care of medications and sleeping and anything else that comes up. He probably feels right now that he will never get better but he will it is just such a slow process and is measured in weeks and months, not days and weeks. They got rid of the cancer now all he has to do is recover from the brutal treatments. My Radiation docs nurse told me for my case that I might as well figure about a year of my life till I get my treatments and recovery in. His case will probably vary but point being it is no quickie and you must be patient and before he knows it the time will have ticked by and he will start feeling good again. Longer distance support is hard and he does not feel like talking send him emails and cards in the mail and even if he is feeling not so good call him anyway once in a while and tell him you care about him and love him and all he has to do is listen. I had throat cancer and after the treatments, for a while, I could barely talk mostly a whisper but he can listen to you. Also, you can call and talk to the sister in law as she could probably use the support during this also. Ask if they need anything you can send or buy for them. Hope some of this helps-Take Care-God Bless
0 -
Thank you for the advice. My
Thank you for the advice. My sister in law just sent us a group text that my brother has been admitted to the hospital because of severe constipation. He fought it but that's where he needs to be to get good care and take care of business. My sisters and I have been supporting her, I know what it's like. Their kids (all adults) are scared seeing their big strong Dad like this. I often send him texts with a joke or funny picture and always tell him I love him. It just stinks being so far away. I'm hoping once he feels better he will be on a new mission to get back on his bike and get his strength back.
0 -
Linda,LindaK. said:Thank you for the advice. My
Thank you for the advice. My sister in law just sent us a group text that my brother has been admitted to the hospital because of severe constipation. He fought it but that's where he needs to be to get good care and take care of business. My sisters and I have been supporting her, I know what it's like. Their kids (all adults) are scared seeing their big strong Dad like this. I often send him texts with a joke or funny picture and always tell him I love him. It just stinks being so far away. I'm hoping once he feels better he will be on a new mission to get back on his bike and get his strength back.
I do recall going through a bout of constipation. It's just one of the many features of the treatment...
Bike ... as in motorcycle? What does he ride?
He'll be back on it again before he knows it!
I hope he's back home soon - and I'm glad he has your support through this time. I'd be willing to bet he appreciates it much more than he lets on!
mg
0 -
Bicyclemotorcycleguy said:Linda,
I do recall going through a bout of constipation. It's just one of the many features of the treatment...
Bike ... as in motorcycle? What does he ride?
He'll be back on it again before he knows it!
I hope he's back home soon - and I'm glad he has your support through this time. I'd be willing to bet he appreciates it much more than he lets on!
mg
He is a bicycle rider. He lives very close to the ocean so it's a beautiful place to ride.
He was discharged Friday. They gave him a shot of relistore to clear him out from the stomach since he can't eat or drink much of anything. I've been sending him messages every day and this morning heard back and sounded like his old self, even interested in food. Hopefully that's a sign he'll be getting some food or nutrition orally.
What a brutal treatment. I admire anyone who has gone through it.
Again, thanks for any advice.
0 -
It takes time
To back up what Russ and MG said, it takes time for the body to recover from the chemo+rads. And, even after he starts to turn a corner, he'll have other bad days mixed in with the good ones. They key is to be patient, listen to the docs, and ask about anything that doesn't feel right. I also had a bout with constipation, and the coughing/hacking for many days after the rads. Make sure he stays hydrated, and gets as many calories as he can every day. At this point, it doesn't matter what kind of calories they are. Food is medicine for him now.
mike
0 -
My husband just finished treatment too
Appreciate so much the shared experiences here - shows the variety of response in the human body. My husband just completed 7x5 radiation with weekly chemo on Monday (HPV SCC base of tongue). This is definitely the worst of it for him. Pain and tons of that ropey phlegm. Pain patch not really doing the trick and all meds must be crushed and taken with jello and much salt/soda gargling. Smoothies that work one day are too painful the next but having trouble telling which ingredients to include/avoid. Doc keeps suggesting prune juice for constipation but that hurts way too much. Have been trying to avoid dairy but reliant on VHC Boost. Any other high calorie non-dairy suggestions that won't be painful?
Putting one foot in front of the other everyday . . . Y'all are so encouraging!
0 -
Your RealitymissusS said:My husband just finished treatment too
Appreciate so much the shared experiences here - shows the variety of response in the human body. My husband just completed 7x5 radiation with weekly chemo on Monday (HPV SCC base of tongue). This is definitely the worst of it for him. Pain and tons of that ropey phlegm. Pain patch not really doing the trick and all meds must be crushed and taken with jello and much salt/soda gargling. Smoothies that work one day are too painful the next but having trouble telling which ingredients to include/avoid. Doc keeps suggesting prune juice for constipation but that hurts way too much. Have been trying to avoid dairy but reliant on VHC Boost. Any other high calorie non-dairy suggestions that won't be painful?
Putting one foot in front of the other everyday . . . Y'all are so encouraging!
Brings back memories for me as I went through similar recovery and as you say the worst of times as you feel so lousy, washed out, no energy, sleeping a lot. The whole day you spend just getting through by trying to get enough calories in as your body needs plenty to help you heal and taking meds and rinsing and spitting and dealing with some other things that occasionally pop up. My pain was no problem but for others, it is a challenge. If he only has the patch get with your cancer team and get more pain meds or stronger pain meds. Or if you have a nurse navigator as I had, go to them they are your go-to person to get stuff done for you they will help you get the meds you need. I had a morphine pill that was time release and I would take one every 12 hours and they worked great but they cannot be ground up and when I could not swallow anymore everything had to go in the feeding tube so the gave me liquid hydrocodone. So whatever pain meds you can get in your docs should be able to help you with a liquid version possibly. Does he have a feeding tube? I know there are over the counter meds you can grind or something like liquid aspirin is available but probably not strong enough to help right now. The main thing I was told about pain and have read it on here is "Stay ahead of your pain take your pain meds on a regular schedule don't wait till you have too much pain then take meds for it". Ahhhhh yes, I remember the ropey phlegm hard to deal with but just keep up what you are doing salt/soda gargling as often as necessary to again stay ahead of it and keep it cleared out do it every 15 minutes, half-hour or whatever necessary. I rinsed as often as necessary mixing at least a quart at a time maybe more so I wouldn't have to be bothered with it as much and could concentrate on recovery. I stayed ahead of it and did pretty well but I had a couple of times at night when I woke up gagging and it had cut my air off and I had a time getting it cleared out and breathing again, that's the only time it really got the better of me. I was also sleeping in a recliner which makes it easier to deal with. Most people I have heard comment on here about sleeping had switched to a recliner or comfy chair at some point during recovery. You may not be able to avoid dairy completely or boost as you have to do what you have to do to get through this recovery period just concentrate on getting enough calories in. Again check with your med team or nurse navigator for something to alleviate constipation or go to the drug store and try some different OTC stuff that he can get in. I am wishing you the best and you are in my prayers. This recovery is a slow process and is measured in weeks and months not days and weeks but as you go the days and weeks will pass and you will be through this as many of us have made it. I am pretty sure it was on here I read one time someone said they go day by day, hour by hour, minute by minute and sometimes second by second if need be. Also, the saying on here is NEGU (Never Ever Give Up). Please also if you haven't already check out the Superthread at the top of our H & N page it is a wealth of info. So Take Care-God Bless-stay strong and NEGU.
Below is a recipe for calories I found on the net some time ago for cancer patients and I have never tried it but check it out and see what you think it is said to be a mixer only recipe you don't need a blender. I know this is long but I hope you can find something that helps.
Deb,
So sorry I’ve taken so long to get that recipe for your dad! I checked with our nurses and here it is:
1 box (3.4oz) of instant pudding
3/4 cup half & half cream
1/2 cup of water
1 cup of carnation evaporated milk (use canned not powdered etc.)Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This recipe makes 4 servings. We use it to help individuals we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories, etc. Let us know how your dad is doing!
Karen
0 -
Thankswbcgaruss said:Your Reality
Brings back memories for me as I went through similar recovery and as you say the worst of times as you feel so lousy, washed out, no energy, sleeping a lot. The whole day you spend just getting through by trying to get enough calories in as your body needs plenty to help you heal and taking meds and rinsing and spitting and dealing with some other things that occasionally pop up. My pain was no problem but for others, it is a challenge. If he only has the patch get with your cancer team and get more pain meds or stronger pain meds. Or if you have a nurse navigator as I had, go to them they are your go-to person to get stuff done for you they will help you get the meds you need. I had a morphine pill that was time release and I would take one every 12 hours and they worked great but they cannot be ground up and when I could not swallow anymore everything had to go in the feeding tube so the gave me liquid hydrocodone. So whatever pain meds you can get in your docs should be able to help you with a liquid version possibly. Does he have a feeding tube? I know there are over the counter meds you can grind or something like liquid aspirin is available but probably not strong enough to help right now. The main thing I was told about pain and have read it on here is "Stay ahead of your pain take your pain meds on a regular schedule don't wait till you have too much pain then take meds for it". Ahhhhh yes, I remember the ropey phlegm hard to deal with but just keep up what you are doing salt/soda gargling as often as necessary to again stay ahead of it and keep it cleared out do it every 15 minutes, half-hour or whatever necessary. I rinsed as often as necessary mixing at least a quart at a time maybe more so I wouldn't have to be bothered with it as much and could concentrate on recovery. I stayed ahead of it and did pretty well but I had a couple of times at night when I woke up gagging and it had cut my air off and I had a time getting it cleared out and breathing again, that's the only time it really got the better of me. I was also sleeping in a recliner which makes it easier to deal with. Most people I have heard comment on here about sleeping had switched to a recliner or comfy chair at some point during recovery. You may not be able to avoid dairy completely or boost as you have to do what you have to do to get through this recovery period just concentrate on getting enough calories in. Again check with your med team or nurse navigator for something to alleviate constipation or go to the drug store and try some different OTC stuff that he can get in. I am wishing you the best and you are in my prayers. This recovery is a slow process and is measured in weeks and months not days and weeks but as you go the days and weeks will pass and you will be through this as many of us have made it. I am pretty sure it was on here I read one time someone said they go day by day, hour by hour, minute by minute and sometimes second by second if need be. Also, the saying on here is NEGU (Never Ever Give Up). Please also if you haven't already check out the Superthread at the top of our H & N page it is a wealth of info. So Take Care-God Bless-stay strong and NEGU.
Below is a recipe for calories I found on the net some time ago for cancer patients and I have never tried it but check it out and see what you think it is said to be a mixer only recipe you don't need a blender. I know this is long but I hope you can find something that helps.
Deb,
So sorry I’ve taken so long to get that recipe for your dad! I checked with our nurses and here it is:
1 box (3.4oz) of instant pudding
3/4 cup half & half cream
1/2 cup of water
1 cup of carnation evaporated milk (use canned not powdered etc.)Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This recipe makes 4 servings. We use it to help individuals we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories, etc. Let us know how your dad is doing!
Karen
Your experience does sound familiar. He doesn't have a feeding tube and we are limited on some pain meds because he got a blood clot with the first PICC line. They've said he can double up on the patch and we keep up with the tylenol/cod that can be crushed. Its enough for sleeping, etc but not enough to be able to eat without serious burning sensation. He has been sleeping upright on the couch for a few weeks now and that does help. We've got crushable Colace and Milk of Mag that were doing the trick for constipation until an increase in gabapentin and the second patch, but hopefully we won't need that too much longer.
Thank you for your encouragement and mostly for your prayers. That is what is getting us through.
0 -
Ah geez, the best advise as
Ah geez, the best advise as most of the other has been discussed is having full time caregivers in my case family, 24 hour hopefully. I definitely needed 24 hour care and cheerleading so to speak. It is overwhelming to go through this type of treatment. All of the things that you need to do every four hours medications, food and hydration pumped, a shower, a ride to the radiation appts, cleaning up throw up bowls, on and on ...if I had not had my adult children taking shifts to care for me and make sure all of the medications, and swallowing exercises, feeding tube...hydration...vomit bowl....etc, etc.... I remember nights when I had to sleep sitting up...cat naps... or I was afraid I would choke on the build up on the base of my toungue. Some nights I would cry and ask my daughter if she would just lay on the bed with me to make sure I did not stop breathing. These details are painful for me to remember, but were a part of my journey. I hope your brother has someone beside him at all times to assist. Much love and prayers. Nancy
0 -
Thank younancytc said:Ah geez, the best advise as
Ah geez, the best advise as most of the other has been discussed is having full time caregivers in my case family, 24 hour hopefully. I definitely needed 24 hour care and cheerleading so to speak. It is overwhelming to go through this type of treatment. All of the things that you need to do every four hours medications, food and hydration pumped, a shower, a ride to the radiation appts, cleaning up throw up bowls, on and on ...if I had not had my adult children taking shifts to care for me and make sure all of the medications, and swallowing exercises, feeding tube...hydration...vomit bowl....etc, etc.... I remember nights when I had to sleep sitting up...cat naps... or I was afraid I would choke on the build up on the base of my toungue. Some nights I would cry and ask my daughter if she would just lay on the bed with me to make sure I did not stop breathing. These details are painful for me to remember, but were a part of my journey. I hope your brother has someone beside him at all times to assist. Much love and prayers. Nancy
Thank you for the advice. My sister in law or my 2 adult nephews were with him, one at all times. He's always been a big strong healthy active guy so it's tough to imagine him suffering so. He has lost 35 lbs. but is now taking in more nutrition and able to swallow some. We had a family conference call last week and it was the first time we heard him talk, I was happy to hear him sound almost like his old self. He's completely off the pain meds except for the fentanyl patch. Doctor said last week everything was looking good. Also great news from their daughter that they will be grandparents soon so that will boost his mood and give him something to look forward to. He gets scanned again in October and I just hope that nasty cancer is gone for good. I lost my husband to colon cancer almost 6 years ago so I've been the caregiver.
Thank you Nancy
0 -
That makes me very happy that
That makes me very happy that the family is rallying around him with extraordinary care. I am super independant and could never have conceived even with all I read and advice from the docs how hard this would be. But there is a definitive turning point and it sounds like hes coming around the curve! I really liked getting cards of love and encouragement in the mail. There was a period of time, maybe 3 weeks where I had zero voice, and my daughter had to take all of my calls. There was also stretches of time where I was not making notable progress and I really didnt want to talk to anyone as I had nothing encouraging to report.
It sounds like he is on his slow and steady climb to a quality life again. I logged my progress in months. Once a month I would write in my journal how I was currently doing, and then look at a month prior. THERE WAS PROGRESS!!! Keep us posted, and let him know that we care about him from afar. Best, Nancy
0 -
Linda & Nancy
I agree with you, Nancy, about the progress being gradual, initially post-tx, especially for the first year. Logging it is a good idea.
However, for those without Caregivers...I only had co-workers who drove me to and from Rads for 4 of the 7 weeks. The Jevity only had to be delivered once. I used the experience like a Boxer in the ring, and it helped me to be strong/man-up. And, my tx was harsh- on Morphine at the start of week #2 and spent 4 nights in the Hospital at start of week #6. Concurrent C & R, I didn't have the third Chemo option- they flooded my system with Cisplatin & 5-FU with limit in 2 episodes of carrying 2 pumps in weeks 1 and 4. So, for those without Caregivers- you can handle it with the Meds the Dr.s give. By the way- I hated Morph and only used 4 of 5 consecutive weeks. Hydrocodone was enough.
Tell your Brother the worst is over, Linda. His next scan, basically, is just to establish a baseline for Radiologists to compare future tests to. Something shows in a lot of 3-month scans, but are typically false-Positives. Something showed on mine but my ENT said it didn't bother him. That was over 11 years ago. Just let him know the recovery does take time.
0 -
There You go Againwbcgaruss said:I will Tell You
It just takes time. He is probably feeling pretty lousy right now and it is a full-time job just keeping enough food going in through the tube and taking care of medications and sleeping and anything else that comes up. He probably feels right now that he will never get better but he will it is just such a slow process and is measured in weeks and months, not days and weeks. They got rid of the cancer now all he has to do is recover from the brutal treatments. My Radiation docs nurse told me for my case that I might as well figure about a year of my life till I get my treatments and recovery in. His case will probably vary but point being it is no quickie and you must be patient and before he knows it the time will have ticked by and he will start feeling good again. Longer distance support is hard and he does not feel like talking send him emails and cards in the mail and even if he is feeling not so good call him anyway once in a while and tell him you care about him and love him and all he has to do is listen. I had throat cancer and after the treatments, for a while, I could barely talk mostly a whisper but he can listen to you. Also, you can call and talk to the sister in law as she could probably use the support during this also. Ask if they need anything you can send or buy for them. Hope some of this helps-Take Care-God Bless
Bringing the compassion Warrior you are. Your a Sweetie & wealth of knowledge.
hugs,Lisa ( Daisy). As in driving Daisy Mis Daisy
0 -
Update on my brother
Thank you all for your information. Just what you said has happened or is happening. I finally saw him last weekend and he is doing really well. Eating and drinking all by mouth now, trying to gain weight to get the feeding tube removed. He has also finally taken advice and is using medical marijuana which helps him sleep, his appetite and some pain. He said he can't taste things yet, but I made him some spicy food and he said he could "feel it" so hopefully that means his taste buds will come back. He knows they may not. He was talking almost back to 100%, laughing, etc. My sisters, brother in law and I all had covid tests the week before visiting so we could feel comfortable being around him and he us. We were able to enjoy a beautiful fall New England weekend. We did not go out to eat and the 2 places we stopped to see the ocean, he had his mask on. His 3 month scan has not been scheduled yet. He's been going into work a little, riding his bicycle and exercising at the rehab unit where he had treatment. He shared some more information on his pain in his mouth, it started over 2 years ago and he was passed back and forth to ENT dr, dentist and oral surgeon. Finally, an oncologist he saw at Mass General spoke to his oral surgeon for a scan and then he was finally diagnozed in January.
Linda
0 -
Thankswbcgaruss said:Linda Sounds Like
Your brother is progressing well and on schedule. Thank God things are going well. We celebrate with you and thanks for the update-Take Care-God Bless-Russ
Thank you Russ. He had his PET/CT scan last Thursday and saw the oncologist Friday. They saw a little spot (about 1/5 the size of the original spot on the base of his tongue) which they said could be scar tissue, irritation or inflamation. He saw his ENT yesterday and he thinks it is still healing but they both reommend another biopsy. He was OK'd to get the peg tube and port out so that sounds like good news to me. I have read some other posts in this group about false negatives from early scans after treatment ends. He is still having pain in that area, it has never really gone away, but he has sworn off narcotics because of the issue he had previously. We were with him for 4 days and he did a lot of talking, laughing and more eating than usual. He said the day we left his throat felt a little different so maybe it's all inflamation. Poor guy had a lot of pain with the original biopsy which they said was aggressive. I hope they knock him out for that. He is 62 years old, almost 63. He told me he had never spent 1 night in a hospital before he was diagnosed. When they put the port in, they knicked his lung so he had to go back to the hospital for 2 nights with a chest tube.
Thanks for the kind words.
0 -
LindaK. What a Wonderful
Blessing and such wonderful news. Prayers were definitely answered. Such wonderful news before Christmas it is like the best early Christmas present you could ever get. Tell your brother we wish him the best and you also and may you folks have a wonderful Christmas-Take Care-God Bless-Russ
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards