Have not contacted you lovely folk for a number of weeks now. My sister Jo is now 8 months post treatment 30 rt and 2 x chemo. She is no longer able to eat or drink and at this moment in time is peg dependent. Her treatment has affected her hearing and for many months now she is rinsing her mouth and throat in an obsessive compulsive way. The honest truth is she does this non stop all day and most of the night; constantly rinsing and spitting. She fills buckets full of water and ice cubes also will try various other sodas but it really is so sad to watch her. She seems tormented getting fluid just so far down her throat then spits it up. She knows herself she is not right but it does not seem to make any difference. We tell her doctors and dietician this at her six weekly visits but they do not seem concerned. She just wants so much to be able to drink but has been told that her throat muscles have stopped working...She was so sad in the clinic today that finally they said they will have her in to see if dialation will work; I hope and pray that this may help her but she seems so sad and depressed. She has seen a psychologist but did not feel this was doing her any good so she did not return. She is aware that in saving her life she has had to forfeit something but is so into herself and with her deafness and the compulsive drinking and rinsing this cannot be right. We know she has to help herself and today I tried a bit of tough love to encourage her to take more water through her peg. She trembles non-stop...but the most worrying aspect is the rinsing I can honestly say she rinses and spits gallons and gallons of water throughout the day and night...She also has treatment induced sleep apnoea...I really did hope that when I last contacted you lovely guys she would have improved somewhat by now. It is not regular rinsing and spitting. It is constant every single minute of the day. Has anyone else experienced any of the above symptoms post treatment to this extent? Her mouth and throat are so dry all the time.....

Very best wishes to you all.

Kathie UK

Ok - one problem at a time:
1. Depression/OCD type behaviour - get back to the psychologist or see a new one
2. Difficulty swallowing: the response you're getting from your MD and dietician is not acceptable. To be "unconcerned" about her swallowing issues tells me they're not treating one of the largest areas of human quality of life - completely unacceptable.
Has she had a Modified Barium Swallow Study? If not, insist upon it. It will tell you WHY she's not getting fluid down - it may be there is a tightening of the esophagus which won't allow fluid to travel down to the stomach (a dilatation could improve that) but it could be that the larynx isn't lifting up high enough to trigger a swallow - if that's the case then going through the discomfort of a dilatation procedure will be of no help at all. Treatment to get those swallow muscles active and elevating could help the problem. So you see, it is very important to know the WHY of the problem before you determine a solution.
3. The rinsing - WHY is she doing it? Is it because she can't swallow her saliva, does her mouth feel dry all the time so the rinse serves to moisten her mouth? The constant rinsing can be an irritant and serve to dry out her mouth more. If she can't swallow then she has no choice but to spit. If she can swallow - she should. If she needs more moisture there are products that are similar to saliva - artifiial saliva - that would be much better for her to use if it's a moisture issue. After 8 months, she's devloped the habit of spitting and rinsing - it would be a lot of effort for her to break the habit by using an oral mosturizer and forcing (essentially) herself NOT to rinse and spit constantly. It could take a while but the end result would likely be a return of the normal balance of the mouth and she might not feel the need to rinse at all.
Swallowing is a poorly understood issue, one that the medical community may be a little slow to address - please, PUSH it!

Im so sorry your sister is having so many problems after treatment. It must be terrible to watch her behave like this!

To me it sounds as if she has developed some sort of psychological disorder similar to people who wash their hands 200 times per day. She needs a professional to help her thru this. I would think that anxiety medication would help to calm her nerves so she can get a handle of the constant rinsing and spitting. Those medications can take weeks before they build up levels in her body to work.

I wish your sister would become a member of OCF. It would be helpful just knowing she isnt alone with her problems. We are all patients, caregivers and/or survivors who have all struggled at one point or another with treatments or the after effects. Best wishes to both of you.

Katie

Whoa - time for some medical intervention IMO. I agree with Jennifer and Christine completely. One additional option, if Jo does not want to be taking anti-depressants, then encourage her to at least talk to a therapist. Not being able to swallow is NOT the end of the world, although it does indeed feel like it. compulsive and constant rinse and spit is not normal although I had to do it every half hour or choke to death but it sounds like she is doing more often than that.
sorry to hear about this
charm

Just a couple of quick questions: Do you know why she is rinsing and spitting so often? Is it to alleviate a feeling of choking? Or dryness? Or maybe she thinks constant attempts will get her swallow back? Even people with a compulsion to do something, do it for a reason that is important to them. With that knowledge, maybe you can skip the unconcerned doctor and dietician (and shame on them) and go straight to the speech pathologist. Also it might be worth actually counting how many times an hour she does it. This will carry more weight with the healthcare workers if you can quantify it rather than telling them she does it constantly. It is possible the doctors think you are exaggerating or they are translating what you are telling them into once or twice an hour (hence their lack of concern). How long does she sleep before the need to rinse and spit wakes her up?

Hi - sorry to hear your sister is suffering. You said her mouth is so dry all the time - I'm assuming this is why she is rinsing and spitting constantly - biotin has a mouthwash that should help - they also have a spritzer that may help, and they have a gum. All designed to help with the lack of saliva. And I hear it's available at Walmart.

Otherwise every bit of advice these guys have given you is gold push her Drs. To find out why she can't swallow and it sounds like she does need some counselling. My thoughts and prayers are with you... Take care

Hi Kathie, We are in the UK as well. I agree with the others, maybe the rinsing and spitting is partly psychological, but it's worth asking for the swallowing barium test. They did that with Martin, where he had to swallow wet bread and yogurts and they watch it on camera and analyse why there is difficulty swallowing. Also for the dryness, ask your consultant for samples, we got Biotene, and various other gels to test. At his worse as well when Martin was dependent on the nasal tube, we were loaned a nebulizer and I used to make Martin do a 20 minute session twice a day. It did work a little with the moisture in the mouth, all be it temporarily. Do you have a care officer? We were assigned one and she did get stuff done. If not just hound and pester the nurses or dietician until someone does something. You have to nag nag nag with the NHS I have learnt, but nag enough and they will look after you. Which is your hospital? We are under the Royal Marsden.

Hi Kathie: I was a bit OCD about rinsing my mouth when I was first out of treatment, maybe every hour. I realize this is not as often as your sister. For me it just felt good. I secreted a lot (the opposite of dry mouth) but still the feeling of a clean fresh mouth was so great I sought it out a lot that first month. I use Biotene products (toothpaste, rinse, oral gel) and they are great for freshness and to help with dry mouth. Also, I had trouble swallowing out of treatment and the doc gave me a steroid to open up my throat. This might be something for your sister. I am also working with a really gentle but firm speech therapist who helps with swallowing and eating. I had a big mental block against eating because my mouth was so full of sores. This therapist has really helped me. I still have my PEG but getting it out seems an option now. I feel so badly to hear that she is having such a tough time. Has she ever posted here? Would she be into email contact? I would be happy to chat/email with her. She is lucky to have you in her life. Best to you and your sister. -Michelle

Michelle Anne - just out of curiosity what steroid?

thanks for all your suggestions....have not contacted OCF for a number of weeks now but was so touched by your concern with regard to my sister...I have tried to get her to join the forum in her own right but she makes excuses that she cannot do it at the moment,,but never say never.

We really said everything that should be said at her last check up and she was referred to a psychologist...they took on board the amount of time she spent rinsing and spitting was not right..

I must admit that everything you folks have suggested she has done. Today she was admitted to hospital for attempted dialation. After coming out of theatre the consultant told her that they were unable to do anything at all because of the vast amount of scar tissue caused by her treatment and would therefore be peg dependent for the rest of her life. I feel now she may have resigned herself to this and with the help of her higher power will be able to move forward...
Thanks once again...Oh by the way Cecilia she received her radiation and chemo at the New Oncology hospital at St. James'
Hospital, Leeds and follow up treatment at York. She still rinses and spits constantly but we hope her psychology visits will be able to deal with this. We can only see what tomorrow brings when she has had time to deal with today....and I do hope that she will get in touch as I know she would get so much and also could contribute so much to your wonderful forum.

Love to all
Kathiex

Can I suggest you try a good acupuncturist? There was a study one by a cancer hospital that offered 6 weeks of acupuncture therapy to peg dependent patients - a high number of them (87% I think) were able to get off the peg by treatment's end- its worth a try. It has really helped with the stiffness and range of motion in my neck.

Good luck with your sister - and take care.

Oh, Kathie - I'm so sorry your sister is having such a difficult time. I can understand her reluctance to get on this forum. She has so much to handle now. When my son was in treatment, he only posted a few times because he said it depressed him and I can understand that but we still got lots of help for him because of what I learned by my being here. Sometimes when I read something I thought would help him, I would print out the pages and just leave them someplace where he was sure to see them and it did help him a lot. Maybe it could help your sister until she is ready to come see us herself. I do hope for some better days ahead for you and your sister.

Thanks cheryld - I will put your suggestion to her - it will give her something to think about and as you say is so much worth a try.

Thanks for your good wishes and you take care.

Kathiex

Thanks Anne-Marie...I also have printed out things I have read which I think may help Jo and I am sure as she progresses and comes to terms with today's news she will feel more able to become involved - I really do hope she will as like yourself I am always trying to get across to her how this forum would be such a good place for her to be and also perhaps her contribution will be of help to someone. I hope your son is doing well love and all the best

Kathie

Kathie

What a wonderful sister you are. Despite not being able to swallow, Jo is lucky since she has a sister like you. (but let's keep that between you and I).
Now to the "problem": it is a real disaster not to be able to eat or drink permanently. It's not clear that this is Jo's fate, since she can try not only accupuncture but also VitalStim (or one of the other Electrical stimulations).
Before Jo does anything else, she should have her doctor write a prescription for a barium swallow test administered by a qualified speech therapist which is the definitive medical exam to show what is exactly the problem. Lots of cancer patients cannot swallow at first but bounce back.

But it is indeed my karma to be on a feeding tube for life, so I hope what I have learned the hard way may help Jo if she too is consigned to a similar fate. I fought against accepting it for over a year taking VitalStim and swallowing therapy sessions three times a week for a year until I failed the 4th Barium Swallow test . If this is Jo's lot also then:
First, Jo should and must grieve for what is lost
Second, Jo can discover life goes on and is still worth living
In that regard, you can print out the columns by Roger Ebert that were here on on OCF - I've hit the links to make it easy.
Nils by Mouth
and its follow up column
The way to one's heart is thru the stomach
Third; for her birthday, Christmas, whatever, buy Jo a Vitamix. Then she can do a blenderized diet, here's an interesting OCF thread on that
Blenderized diet recipies with a free offer for tube feeders.
I use my Vitamix to "eat" dinner with my wife each night. The exact same meal she cooks with love, I put into the Vitamix and my tube. It's like a cyborg, with the Vitamix as my teeth and the tube as my throat so we can still share the exact same dinner. It really helps me psychologically.
Keep the Faith
Charm

What great suggestions, above - for you, Kathie and for your sister.
Charm - I'm so glad you re-posted the Roger Ebert columns. He is really something, isn't he? And so are you, - with your words, and your empathic compassion, you and the others offering your experiences, give not only practical, useful advice, but you also give "Hope" and that in itself is a very precious gift!

Thank you Charm for your kind words (will certainly keep it between you and I!)

Jo has been through all the tests barium swallow etc. etc. but with the same prognosis each time. However, after her last procedure her doctor spoke to her and again she was told that this was how it was going to be. She was so upset at first, as she did think there might be some light at the end of the tunnel, but this was not to be. She came across yesterday evening and seemed much more at peace and spoke of how she must accept that this was how it was going to be...There was even a little bit of the old sparkle in her eyes and June being the strawberry season in England we had some strawberries in and she just, got the taste, which she said was wonderful, and when she had finished just spit the residue into a tissue and rinsed her mouth...it was so good to see her doing that. She did the same with some fresh boiled ham we had just cooked....and when I made a cup of tea I made one for her along with everyone else and she just washed her mouth out with it and the taste made her feel good...So I am sure she feels so grateful that at this moment in time she still has her taste. Also she has now been given a mask to wear at night for her Rx induced sleep apnoea... I did try to get her to write something to you folks while she was here but she would not...I will keep encouraging her to do so without becoming a pain in the backside and hope that it will not be too long before she will as I am aware that even just a little thing someone writes or contributes can help someone else on the forum and just might make a difference to someone's life.
Will print out Nil by Mouth/The way to one's heart is thru the stomach. Roger Ebert and all he folk who get in touch are such remarkable and wonderful people.

Thanks to all
God Bless
Kathiex

Kathiex

Hi Kathie,
I also have extreme dry mouth from two rounds of treatment of both chemo and radiation (70 radiation treatments in all). My salivary glands were completely destroyed. I was unable to swallow for several months but can swallow now after months of swallowing exercises, a small surgical procedure on my esophagus and dilating my esophagus several times. However, the condition of my mouth (not just the drying but all the cells on my tongue and the whole interior of my mouth are out of balance) feels horribly wrong all of the time.
The only thing I have found that helps is swishing my mouth with Biotene mouth wash and spitting it out. I also do this constantly (not every minute but frequently). Sometimes when I am sitting quietly, not opening my mouth or exerting myself in any way, I can go for a half hour or so without swishing my mouth, but if I am talking or walking or really doing anything at all, I must swish my mouth more frequently.
My heart goes out both to you and your sister.
Patricia