Hi everyone! Update on Dad.

Just found out he is going to have 6 1/2 weeks of 5-day-a-week radiation treatments and 6 chemotherapy treatments to make the radiation work better. The medical oncologist said that the cancer had plenty of time to spread, but that it hadn't, which is good. But, I'm feeling worried again. I'm scared for the potential side effects. Lots of people have told me that each person reacts differently and some folks do great while other folks have serious side effects. They said he might need a feeding tube again if he has trouble swallowing. Some people get blisters in their mouth and feel very fatigued. They did say that the chemotherapy is a low dosage (I don't know if that's the right word) so he wont need to worry about keeping visitors away or losing his hair, etc.

Do you know which chemo? Chances are, one of us here has had it. Mine thinned my hair, but I didn't lose it entirely. (As I have very long hair, we did cut it shorter for the duration, and I did wear the special caps ... but my treatments were mostly in February, so it was cold out! On the plus side, it got my mom knitting again and she made me my new favorite knitted cap during that period.) Anyway, double check on that one ... it doesn't happen to everyone, but it does happen to a lot, and it'd be a pity to be told it absolutely won't happen if there's a decent possibility that it might. (Not trying to be a downer, just surprised to hear there's one that doesn't do that... but I know the protocols keep changing and getting better ... so maybe that's one of the improvements!)

One trick that I learned a little late in the game was to ask for wax bits to cover my teeth that had fillings, which prevents some radiation scatter and prevents some of those blisters and burns in the mouth. They'll give you that every day, if you ask. If your dad has a lot of fillings, ask about it! I didn't find out till the last week or two, and apparently it was something they should have told me up front because of it being a common thing and a fairly easy preventative. (Why wax prevents radiation going through, I do not know, but if it works, I'll take it!) For me this was a problem on the bottom teeth mostly ... don't recall needing it on the upper teeth, but my memory is a bit hazy. And your dad's current teeth may be better than mine were at that point.

That's good that they think he won't have to fret about visitors! We had to use caution, but I do a lot of volunteer work with kids and have friends with lots of kids, so that involved a few more germs. Hopefully adults will have both better health and better sense when they come to visit. Make sure they don't overwhelm his resting, but if he's got a favorite show to binge-watch, a TV buddy might be a fun thing to have. Good company for him, and a bit of respite care for you. (My own kids used to insist that they had to stay up late with me each night so they could 'take care of me so dad could rest' so they could watch more TV with me, LOL. It was actually good bonding time.)

Anyway, those were some things I encountered that maybe will help your dad out, and you ... whatever low-key hobby he enjoys (like the TV), this is the time to indulge it. And friends to enjoy it quietly with him, so you don't feel alone (if that happens ... it can be scary being the caregiver, and it must be as exhausting as being the one going through treatment, in its own way). If he likes some light reading and enjoys hobby magazines or the like, the initial chemo might be a nice time to enjoy some reading ... the later ones, the fatigue might make him doze off more (I did, to my surprise, but did do some light crafting the first couple weeks). And something for you, if they let you sit with him, or whoever is his driver for treatments. Something to suck on during chemo, if it's one that gives an 'odd taste' in the mouth ... lots of hospitals offer patient care packages with sweet little gifts, but many contain mints, and mint isn't usually an oral cancer patient's friend at a time like this. There may be other little sweet things in the chemo area that they do for patients ... they can be really nice, varies from center to center. Ours had a lady who came on certain days for an hour or two and gave every patient a hand massage! I totally wished I could reschedule the rest of my appointment days after I found that out, LOL. (I had one that was shifted a day, and met her, and she was just a sweet angel.) If you find out your center has patient care things like this, no idea how you might ask but someone must know, maybe you'll be able to get your dad's times to line up with the ones that would suit him. (or you... you deserve it too!)

Sorry if I ramble too much ... just want to share, so you and your dad can have a good experience ... there are always surprises, but not all of them are bad ones. I wish for you both the chemo days of massage therapists and kind nurses and friendly fellow patients. ((hugs)) And the radiation time slot of folks who you bond with, so you can cheer for each other each day as you end up getting to know each other a little bit at a time.

Your dad will probably be given a hearing test to establish a baseline before he gets chemo, if he’s getting Cisplatin which is platinum based. If he developed ringing in the ears or Demi I shed hearing, he should mention it to the doctors ASAP. The doctors can switch him to another kind of chemo. Cisplatin and Carboplatin, however, do not cause major hair loss. There will be some thinning but this also happens with radiation if the beams hit the hair.

It will be prudent to keep him away from crowded places as the radiation may have an impact on his white blood cell count. It doesn’t mean he can’t have visitors but if anyone has a cold or the flu, then they should stay away.

As you and him move forward, it’s likely you will have more questions. Do ask the questions on the forum. It is likely that someone will be able to share their experience with you. Wishing you and him all the very best.

I don't know which medication yet. Is 6 chemo treatments a lot? I'm sort of confused again. They said his tumor was Stage 4, T2a (I think ) and N0. They said they removed 19 lymph nodes, none of which were positive. They said it didn't invade lymph tissue or blood vessels even though it had many months to do so. They got clear margins, but one finger of the tumor extended close to the margin but when they scraped the tissues left in him they found no cancer remaining, so Dad was in a gray area whether he would even need chemo. It seems like a lot to me. They said because it had effected the bone, he'd definitely need radiation. Does radiation and chemo seem right in this instance?

I would think that the chemo-radiation in this case is to prevent a stray cell from getting into the lymphatic or blood circulatory system an migrate to other parts of the body. The number of chemo treatments depend on the dosage. There are patients who get 3 “big bags” (which my husband had) or a smaller dose each time but with more treatments. The same applies to radiation. My husband got 70 grays (units of radiation) for a total of 35 days, I.e. 2 grays each day , but in his subsequent radiation treatments, each time he got 20 grays in total over 5 days, I.e. 4 grays each day. So he actually got a stronger dose for his subsequent treatments. You may want to ask the doctors about this.

I had the six weekly treatments, and it seemed like they thought it was the standard at that time. Or maybe it was just the standard for 'just in case' when the nodes came back clear but they were paranoid anyway. My situation was a little odd ... I'd had surgery for the initial cancer that May, had the neck thingummy in August which was all-clear, and then the tongue recurrence in December. So I think they weren't taking any chances, though the tongue situation was minimal both times.

Hi Vicky. This sounds very much like my recent protocol.
I had 33 radiation treatments over 47 days, and 7 lower dosage Cisplatin chemo infusions weekly.
I could have opted for 3 larger doses, but I felt that the lower doses would be easier to tolerate, even though more frequent.
Generally, I think the effective smaller doses are 40mg each, and the large ones are effective 100mg each.
Now, this is important, the reason that I say, "effective dose", is because the actual amount of drug is based on your height and weight.
So my infusion bag showed 78mg, and I was getting nervous that I was getting the wrong dose for 7 weeks. But the Oncologist explained the adjustment to me, and I also found a dose calculator online, that eased my anxiety.
And the reason that I had 7 infusions, not 6, was because I started mid week, and there was also a holiday, so my last treatment was just shy of 7 full weeks.
Best wishes that everything goes well with your Dad. It's very good that you are making sure you understand everything. I suggest running by the Oncologist, what I wrote about the 40mg weekly dosage, and the height and weight adjustment.

Thank you, everyone! That's very helpful. What side effects did you all experience? I worry for my dad but am hoping that the fact he had the cancer removed first, and the doses are low, it will be easier on him.

Pay very close attention to your fathers intake, monitor it every single day. This is something that is within your control. Intake is the key to how easy or how difficult this will be on your dad. Every single day make sure he hits his daily minimums of at least 2500 calories and 48-64 oz of water. If your father is on the slim side he may need even higher daily minimums of 3000 or 3500 daily calories. If he is struggling to hit his fluid intake minimums, he can get extra hydration if his doc writes him a prescription for it. Extra hydration will help your father to feel better very quickly. At least thats how I remember it. I would drag myself in and get a couple bags of fluids and walk out feeling like a new woman. Always ask your fathers doc before giving him something new, even vitamins. Some vitamins can actually interfere with his treatments.

Every patient is different and will experience slightly different side effects regardless of "low" doses or not. Ive watched so many people go thru this over the years and sadly most will have a hard time and skimp on their intake. This leads to a viscous cycle of playing "catch up" thinking the next day the patient will do better but then the next day comes and its even harder. Unfortunately most will start out ok but about the 3rd week they start to notice the side effects and begin to struggle. As your father continues with treatments he will find everything becoming progressively more difficult. Most patients who had the smaller weekly dose of chemo fared only slightly better than patients who had the 3 "big bag" doses of chemo. Radiation continues working even after treatments are finished where most patients worst weeks are the first 2 or 3 weeks right after their last treatment.

Pay close attention to his hearing. Make sure you tell your father to speak up and tell you and the doc if he notices anything different. Even if its only a slight humming, its very important. Most patients will not think much of it and many patients wont want to say anything about a very minor change but they must. Certain chemos cause permanent hearing loss. Prior to getting another dose of chemo the doctor needs to be aware of any hearing changes so the chemo can be changed to something else. Do NOT let your father take another dose of the original chemo if he says his hearing has changed. The same thing goes for any change in his bathroom habits. Chemo can be very hard on the kidneys, especially on the chemo days and the next couple after the chemo is given. His fluid intake must be watched closely to make sure he is flushing that poison out of his system. Its a good idea to try upping your fathers fluid intake the day before chemo, the day of chemo and the day afterwards as well.

As a caregiver, you have a very difficult job! Make sure you take some time just for yourself. Even if its just to go out to lunch with some friends, going for a manicure, or taking a walk around the block to help clear your mind. Too often we are so wrapped up in caring for the patients that caregivers dont notice when they start becoming overwhelmed. It can happen to the best of us! Thats why its so important to take some time away from doctors, hospitals and the patient and concentrate on doing something that you enjoy. Kinda like a mini vacation for a few hours.

Dont be surprised if well-meaning friends and relatives ask what they can do to help your father. Make a list of every single persons name and contact info. Tell your friends and relatives when the time comes, you will let them know what they can do. Theres a million small things that can help make this easier for both you and your father to get thru. Picking up meds from the pharmacy, walking the dog if you or your father has one, getting the mail, grocery shopping, doing a load of laundry, taking out the trash, driving your father to treatments, sitting with him on chemo days, even giving someone the task of updating friends and relatives you will find is a big help, among other things. Maybe you could put one person in charge of taking your father to his treatment on his chemo days to help give you a break and also to enable your father to spend quality time with others who are close to him. If you havent already done so, call the American Cancer Society (ACS) and ask about their volunteer driver program and their $300 voucher to help pay for prescriptions or for transportation costs. I was fortunate enough to use the driver program a couple times even though I lived about 45 minutes away from my treatment facility. There were a couple very kind cancer survivors who drove me to my treatments which helped take the burden off my teenaged son even for one day.

Read and educate yourself with posts and all the do's and dont's for OC and its treatments. Be especially careful about washing hands, using hand sanitizer and not bringing anyone who has even a slight cold around your father. What may not be a big deal to someone who is healthy can become a nightmare to someone going thru cancer treatments. Most patients will struggle with low white counts during and after rads/chemo. It took me a couple years after finishing rads/chemo before my numbers were in the normal range. If your father hasnt yet had a full blood panel done including thyroid and testosterone levels talk to his doc and get it done right away. These numbers are very important to determine down the road what your fathers regular numbers should be. Getting this info later wont work so make certain its done prior to starting rads/chemo. Your father should have also seen his dentist for anthorough cleaning and check up and had flouride trays made (if he still has his own teeth).

Hope I didnt overwhelm you with too much info. Best wishes to you both!!!

Anything Christine says is gold.

She mentioned a prescription for hydration, which is one of the things I didn't know about at the time, though being on the feeding tube, I was mostly okay. But since my chemo was in the same building as my radiation, if I had actually had an issue, my doctors would have been able to just send me upstairs and make them hydrate me ... if your dad's treatments are all in one location, that can happen for him, too, if necessary. Is he having a chemo port put in? That makes a lot of difference, getting all those pokes and prods, and helps for the blood draws and hydration and stuff as well as the chemo infusions. (They may do chemo without it, I don't know, so I'm asking just in case. It felt scary, but it turned out to be well worth getting.) So ... totally ASK if you're worried about anything, and get the doctors to listen.

Let them know when he's in pain (especially if he's anything like my dad was, and refuses to admit pain to medical professionals). It took me time to realize that my pain was above and beyond, but when I did say something, they were on top of it and had meds (pain patches, etc) ready to go. I just should have asked sooner ... it's always okay to ask.

Side effects really do differ. I mentioned that I did have hair loss, earlier. I knew to expect it, but it was still very surprising. Given the radiation and surgeries and stuff, I'd already planned ahead and had it cut short (likely not an issue for your dad, unless he grows it waist length like I do, LOL), but it still startled me how much there was to lose ... we have more than we think! It's not a terrible thing ... just something to prepare for. Not sure what your temperatures are like, but do be prepared to guard against sunburn and such if this begins to happen. And for maybe a year after radiation, I was cautioned to guard against too much sun ... we had a beach trip half a year later, and I wore a big sun hat to protect my head and my neck ... my hair was doing better, but I also had to protect my neck, which looked healed but still needed care. Just one of those little things to keep in mind ... my initial stuff was in winter, when we don't think of such things, but this is summer, and it might matter for your dad now.

Some folks get nausea, some don't. There are prescriptions for that. Sometimes they even include some of it in with the chemo treatment ... they'll tell you if they do, and also give stuff for at home if needed. That was one issue I was blessed to avoid.

When you find out which chemo treatment they plan to give your dad, you'll be able to look that up more specifically, and also those here who've had it can chime in more specifically. I'm one of those who reads all the prescription pamphlets with meds I get because if there's a wonky side effect, I'm bound to get it ... but since they don't hand those out at chemo centers (maybe another thing one can ask about?) reliable websites are useful in that case. (I did read the info they had me sign off on at my first treatment, and refused at least one treatment based on the paperwork they gave me ... interesting story on that one ... but the nurses were great about it once they understood I was serious.) Anyway, that goes again with Never Be Afraid to Ask. They WANT to help.

((hugs))

Kristen