I'm starting treatments on January 5, 2015. Anyone else starting treatments this month who'd like to join in to support each other in getting through these treatments? or already in treatments?
Caregivers and those who've been down the road please feel free to offer support.
I'm wondering what I can do to prepare. I am getting rads and chemo. I'm wondering about creams to support skin for the burns before they start and during, swallowing exercises and things like that. Hoping we can help each other.
Hi!
My husband is currently in treatment similar to yours. Here is the few things I can strongly recommend:
Get a journal. Write down what/when you feed yourself, when you take meds, when you have bowel movements, symptoms, and which medical personal you had on each day. This is important because you need to keep track of calories. Medications sometimes aren't effective anymore (especially pain) and if you're taking them frequently and still feeling pain you can get something better. Cisplatin can cause hearing problems, so if you have ringing in the ears or other hearing problems report it right away. If you have any new symptoms through your treatment tell your doctors so they can prescribe something or offer advice. You will see so many medical professionals and sometimes they will have opinions that differ. I highly recommend writing down the names of your nurses and people you talk to on the phone. This saves confusion if should something come up.
He is using Miaderm cream. Maybe someone who has tried different creams can offer you their opinion on which is best. You will have a speech therapist that will give you swallowing exercises to do, but the best thing is to keep swallowing as much as you can.
QueenKong - welcome to the family, we're here to help. I'm sure your medical team will be recommending creams for the inevitable burns as well as various mouth rinses, etc. Once you have those in hand you can query us and folks will weigh in on what they've found effective. For maximum burn relief Silva Sulfadiazine was the stuff for me, at least for the last few weeks. It's a fairly common salve that's been around but I found it worked beautifully.
Assume you've been advised about preventive and ongoing dental care. Have you had your thyroid levels checked? It's not a bad idea to establish a baseline and I wish I had known about it back then.
You didn't mention whether or not you were (or have) getting a PEG. That too is something we can all discuss as you need.
You've been through a lot, and this treatment isn't easy. But you sound like someone with a lot of courage and determination. I know you'll get through it!
Never hesitate to ask any questions here on the forum or to PM people. This is a family you didn't ask to belong to... but you won't find a better one.
Sending every good thought you way.
There are SPOHNC, Support for People with Oral and Head and Neck Cancer, meetings in local chapters that meet once a month. In NYC they are at Mt. Sinai, NYU and Beth Israel, others are in Long Island, Upstate NY. The one I attend is facilitated by a Speech and Language Therapist, SLP, and is very helpful.
As far as creams, I only needed Aquaphor, then another time used Cetaphil, which was less greasy, as both were suggested. I also used liquid soaps, either Aveeno, Cetaphil or Dove liquid soap for sensitive skin.
https://www.spohnc.org/local_chapters.phpGood luck with treatment.
You may already know, but I didn't mention not to put any creams on the day of radiation, only after. You want a clean surface being radiated. The same goes for any other ointments, oils, fragrances. I didn't use much scented anything either on myself, around the house or want to disturb others in treatment due to chemo sensitizing your senses. I could smell garlic a mile away on people's breath, and some perfumes/colognes were like a smack in my face.
Midwestwife - That's a good idea, keeping a journal. I'm going to start one tomorrow.
David2 - I don't know what a PEG is so I don't think I am getting that. I assume they have checked my thyroid levels.
PaulB - I'm going to look into that support group. I won't be wearing any lotions or fragrances when I start except maybe a little coconut oil on my legs and arms to prevent dry skin.
I woke up today with a bad cold!!!
Will they delay start? Should I ask?
I don't know about a delay, possibly, but tell your medical team everything, and may advise you what to take, do. Any OTC products should be inquired about also. Maybe try some fresh ginger tea with honey and lemon.
Thanks PaulB, I am doing the tea and drinking. I'll try the neti pot too. I called and left a message but no one is in and I have to show up at 8am to start with the labs and everything then chemo (cisplatin) si I guess I'll find out then. 6:45am subwat to Manhattan
They may want to see you anyway to evalute you, do labs. I never used a neti pot, but several things I know is not to use tap water, clean it thoroughly, don't use cold solutions in it. If the commute gets to be too much there is The American Cancer Society's Hope Lodge on 32nd street between 6th and 7th Avenues. Its free of charge, has 67 guest rooms, and better than many hotels. I stayed there 6 weeks in 2012. The only requirement is travel time to be more than an hour, and most places are by commuting. MSKCC, if treated there, have shuttle busses every 20 minutes to and from. Others need their own travel arrangements...subway, bus, taxi, ambulette, access-a-ride. See your cancer centers social worker who makes the arrangements.
Ask about after hour concerns since most seem to occurr at night, weekends and holidays. Mine gave me a contact sheet, including the oncologists number. I called once, and doctor called back within 30 minutes.
Good luck
QueenKong, I hope your treatment started well today. I started my radiation and will start chemo tomorrow. Im hoping for a quick 7 weeks.
My day kinda sucked. I was there from 8am til after 6pm and now I can't sleep because of the steroids and I had a low dose. It was being there so long that did me in. They decided to treat me despite the terrible cold. I was falling asleep and drooling in the chair during chemo. By the end of the day, I think I have my appointments better organized. Chemo days are going to be long but that was a bit over the top. I should have just left and went to museum or something instead of waiting there like that, had some lunch. They forgot to give a prscpt for one of meds I am supposed to be taking (more steroids) so I am taking another around the clock. I am feeling some peripheral neuropathy in my hands and feet.
Thanks PaulB, Why not tap water? I always use tap. I think I live too close to go to Hope Lodge. I live in Brooklyn but the commute door to door via subway is more than an hour. Driving there, the parking is soooooo expensive and car fare through the roof. I am going to talk to a social worker but was thinking the exercise would be good for me.
Jeff, we're off and running. Remember to drink lots of water tomorrow! I packed a bag of things to do. I was in the chair for more than 3 hours. I was really happy I brought a little notebook that was recommended by Midwest wife. What kind of chemo and how much? I put mine in my signature.
Bring along some creature comforts for the treatment. I was happy to have my favorite mag with me and that bar so I had something to eat. I also brought one of those mugs that keeps things heated and had tea all day. I wish I had brought my own tea bags though as they were limited. I spent time trying to organize my calender and appointments.
Tomorrow, I see a nutritionist too and am hoping for lots of tips for eating healthy. I am hearing a lot of mixed information about things like raw veggies or not, supplements or not, etc. I am hoping we can do some juicing to get in some healthy things.
Also, trying to develop good habit like gargling, tooth brushing, gargling. I think I will try to make a chart. I loose track of what I have done or not.
I got very philosophical about long waits in hospital. If you're going to feel like crap, it doesn't matter much whether you're at home waiting to feel better or at the hospital waiting to feel better. You quickly learn what to bring to keep you occupied. My wife brought her knitting, I always made sure I had my phone and charger.
The nutritionist will be good for you. Write things down, ask lots of questions. Best to know all you can now, it gets harder to take in all the info later. Bring your caregiver if possible, a second set of ears is very helpful.
Hope tomorrow is a better day for you.
Usually the first day is the worst going through the unknown, getting instructions, scheduling. It should become more routine as time goes by.
The decadron/Prednisone kept me up too. It also raised my blood sugar to very high levels being a diabetic, so I had to adjust my medications.
Let the doctors/medical team know about the neuropathy. They can slow down the infusions, reduce dosage, take other measures to help, if needed. It can become permanent in some cases, like mine, but often goes away after treatment. The same goes for hearing, eyesight changes to let the staff know.
As far as the neti pot, I understand some tap water may have bacteria, organisms, and other containments. Ingested, these may be killed by the stomach acid, but bacteria may survive in the nasal passages, so that's why they recommend bottled, distilled, boiled or sterile water. When I use my humidifier at home, and use tap water, I can see all the containments, which clog the filter.
An hour is an hour no matter where you are coming from. I live over the bridge from you, and was able to stay at Hope Lodge, as did others. A caretaker over the age of 18 can stay with you or you can stay alone, which I did, but will need a medical note saying you are able to care for yourself. Many go home on weekends.
As suggested in another post, you may want to see about help with dropping off/picking up your children from school, doing other chores. American Cancer Society has volunteer drivers to drive you to and from treatment, but I was unable to find any in NYC to take me to NJ, and others may have gotten transportation/gas money, but those funds were not available here, but give them a call, If needed.
I hope this helps, and today is a better day.
QueeKong,
Finished up my first day of chemo. My chemo is the cisplatin and its 100mg for two days in a row every three weeks. We will see here shortly how bad the nausea and everything gets. I was told to expect it to hit in the morning. I am going to try to get ahead of it with the pills they gave me tonight. I am also hoping to be able to eat as much as I can before the radiation gets to me. Good luck with all of yours and we can hope we fly right through it all.
Thanks for the advice, I've got to look into rides. I was expecting to take the train for most of the treatments but can barely get out of bed. I keep running a low grade fever. I told them and they gave me fluids yesterday. I love 4 lbs over night sweating yesterday. I'm drinking things and using the neti pot with filtered water in the future. I wish they would have waited to start til I was past this cold. Sorry to complain but I am bad off. I've lost my voice from the coughing. And I know this is only the start.
Jeff,
That's a pretty hefty dose, How are you doing today?
Call The American Cancer Society. They are available any time, 24-7. I am a volunteer driver take patients to their appointments. There are hundreds, maybe thousands of others around the country that also drive. This group is made up of mostly fellow cancer survivors and caregivers. They will provide door to door service.
Taking the train is rough, not to mention all the people. If all else fails, another option is New York City Access-A-Ride. You can probably qualify for temporary transportation being in cancer treatment or for as long as needed. You can take it door to door anywhere in NYC, for any reason, 24hrs, and is the same price as the MTA fare, $2.50 each way, and may take another passenger. In some boroughs you can take a black car service instead to certain locations, same fare. The only problem is the application interview time, around 30 days, but maybe it can be expedited. You can call to ask, request an application, if interested.
New York City Transit
Para Transit Division
130 Livingston Street
Brooklyn, NY 11301
1(877) 337-2017
QueenKong, I sympathise with the transport situation. I tried to be independent and catch the bus but ended up using the Cancer Volunteer Driver service Christine mentioned. It was interesting meeting fellow patients and conversation never flagged during the 40 minute drive. I found I had to have back-up if there was a day they couldn't help me but even that worked out better than I dared hope.
Pity about the cold and hope it clears up soon.
QueenKong,
Sounds like a rough start. I couldn't imagine dealing with a cold at this point. I was doing ok until today. The nausea really hit today. I hope it slows down soon and I can get back to hydration and eating. The rads haven't been too bad. Neck is starting to get red and stiff. I hope you can find some rides to treatment and I hope you knock that cold off quickly.
I'm going to try to reach out to these services over the weekend. I had no idea I'd be too sick to take the train.
Jeff, sorry you are dealing with the nausea. I can imagine what it must be like with that hefty dose.
This cold really sucks.
19 treatment done, 16 to go. I've made it to the half way point. It's getting rougher but I'm getting tougher. At least that's what I tell myself.
The blood clots and breath shortness were the scariest part so far.
I've got to figure something out besides boost to keep up the calories. Ingredients are disturbing. corn syrup.
hydration - nutrition - pain management
Focus on these three things and you will get by. I'm with you about the stuff in the cans. Get protein powder and mix in blender and that will help alot. hang in there!