“Drugs are not always necessary. Belief in recovery always is.” – Norman Cousins
You’re going to start treatment. You are going to be receiving Melphalan as one of the chemotherapy cocktail drugs. This is what you need to know.
Sadly, it is just one more thing YOU have to be proactive about – maybe. Some nurses, docs and facilities think that because this has not been proven in studies to be helpful, they don’t always tell you about this important thing you can do to minimize serious complications of Oral Mucositis. (Anytime you hear “itis” at the end of a word, it is a suffix meaning inflammation.)
Oral Mucositis: Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer.
This inflammation and ulceration leads to open sores and infection. It can then travel down the entire digestive tract and with a suppressed, and often non existent immune system it can be pretty scary stuff, not too mention incredibly painful.
So make sure you buy this at the local pharmacy, it’s called Biotene. It is a non-alcholic mouthwash. You want to have it on hand for rinsing your mouth without irritating the delicate membranes.
When receiving Melphalan, the tip is; (and many nurses DO encourage you to do this), you want to suck on ice cubes – (preferably crushed ice)
BEFORE (15-20 min, some even say as little as 5 min),
DURING, and
AFTER (again about 15-20 min)
Melphalan is generally administered separately and so if you know you are getting it, just start sucking on the ice cubes. What this does, in theory, is constrict the blood vessels in your mouth so that when the Melphalan is infused in your body it does less damage to this area. Getting it all the way down into your throat area is desirable also, so on and off as you are sucking on the ice cubes try to lay some of them back as far as you can or swallow the crushed ice. What you are trying to do proactively is to prevent damage to the delicate membrane area in your mouth and avoid developing painful sores that will abscess and then travel down the GI tract.
If you do get sores, and you still might (but it’s believed to be less and more manageable), the nurses should give you some ointment that you can dab onto the sores to help heal them and numb them to ease your discomfort so you can eat and drink. The Mouth Sore Care .pdf I’ve attached from MD Anderson, gives you some great tips on general oral care and cleaning to minimize problems.
Our facility had popsicles, so Dave would do popsicles and icing before, during and after his melphalan. His sores were minimal and manageable and a couple of times he didn’t get any. When he did get them, they were very teeny and insignificant, but he was aware of the sore areas and we were proactive in our care of them to keep them from abscessing and getting a GI tract infection.
I think people just know this, because we were told by our nurses and several of them were quite naggy to Dave to suck on his ice cubes, and then I hear about folks not knowing this. ARGH! We did have one young nurse that was quite unimpressed with the whole ice cube thing and told us there was no evidence. I suggested it wasn’t exactly a research study that would garner much income and yet be a very costly undertaking, and she should consider the anecdotal evidence, the experience of the long time chemo nurses, and the lack of invasiveness of the preventive measure. She shrugged and I admit, I wanted to just slap her! (Breathe, let it go…) So there you have it. Good luck.
Namaste,
My wife had her transplant last Monday at Stanford BMT in Palo Alto. She was admitted to the Hospital last Saturday because of fever and pain in jaw for Swallowing. They said it is common in patients receiving Malphalan. While looking for the information on the net I stumbled on your blog. What a coincidence that among millions of pages yours was the one from Sacramento. We are from Sacramento. I have not read your entire blog but intend to read through when I find time as there is lot of good information that can be used for dealing with MM. We definitely have more questions to ask you or possibly meet with you and your husband when we get back to Sacramento.
I consider this to be blessings having found your blog.
Thank you.
-Padmakar and Anita
Absolutely. Let’s meet up when we get back and your wife is recovering a bit more. It will take a while so something light and easy for her.
kit, that’s a good point- “one less thing to worry about”.
Jerry is currently @ day + 7 of the ASCT process at Duke and when they administered malphalen, they had him chewing on crushed ice 30 minutes before, during, and a whole 2 hours afterward. He was pretty sick of the ice by the end of the whole ordeal, but it paid off and he didn’t suffer any sores at all. Given how he feels now (nausea, fatigue), we’re glad that was one less thing to worry about — well worth the tedium.
Mike hated me at UAMS because between the nurses and me saying “eat some more ice”…he was sick of it. 🙂 The place at “home” now has never give Melphalan before….so he told them about it. But they don’t have ice on-site….so he takes a x-large drink with him to take during the treatment. So far….knock on wood…he has never had any mouth sores. But know people who have and everyone wants to avoid them as much as possible!!!!!
Lori: Even though Bob never got to the Melphalan stage of treatment, we were told at UT Southwestern that they also do the ice during the Melphalan phase. (We were actually told that one of their nurses discovered this.)
Let’s hope the young nurse just “resented” the info, but passes it on to patients.
Sg