First treatment questions

[snappy]

Monday 25th will be my husband's first radiation treatment about 8 AM and then first Chemo treatment about 10 AM.

He is taking 5 pills 12 hours before treatment and 5 more 6 hours before, which I understand is for nausea. Then he is suppose to have 30 minutes pre-nausea meds, 1 hr Taxol and 35 minutes of something else.

At Chemo they said he had to have a driver the first time so can be sure he has no reaction. Then if he is up to it, he can drive himself. Radiation said okay to drive himself. Radiation treatments are about 30 minutes.

I think I want to ask what to expect after the treatments? However, I know people are different. Is the person more often fine or sick? He is not really too sick right now. Guess I am afraid that the treatment will make him sicker than he is, altho I know it is to rid the cancer.

I think I might react wrong and keep asking if he is sick or how he feels. Does sickness come on later, or right away. I was told it was the radiation that made you so very tired. Wouldn't he be too tired to drive. I am really concerned here because I don't want him to push to drive himself if he cannot. I also don't want to 'bug' if too much. I know he doesn't need that. This driving may sound trivial but it is an important issue here.

How long before you know if someone will get tired or will get sick. His chemo is only once a week and his radiation is 5 times a week.

[recce101]

Hi! I see nobody has answered yet, and though I haven't had radiation and am not the best person to advise you on that part, I'll give you my best guess -- recognizing, as you say, that people are different.

I doubt if fatigue will be an issue the first day, either from the radiation or the chemo or the combination. It may be a limiting factor within a few days, and how severe it is varies a lot from one person to the next. It usually builds up gradually, so there's a little time to plan.

The chemo nurse's special attention to the first day is because of the possibility (not really common, but it can happen) of an allergic reaction while the chemo is being administered. If that's going to occur, it's usually on the first infusion, and Taxol is frequently the culprit. Don't confuse this with the side effects they've been telling you about. The allergic reaction comes on rather suddenly, while the drug is going in, and causes problems with breathing, pulse, blood pressure, or other vital functions which require immediate attention. I believe there's a rule -- at least there was at my clinic -- that for the first infusion an oncologist has to be present within the facility, not just on call.

If your husband doesn't have an allergic reaction, and I doubt that he will, he'll probably consider the entire session a piece of cake. One of the IV premeds will be Benadryl or something like it, and that tends to make people rather drowsy. Some like that feeling since it helps them sleep through the whole session, but I didn't because it interfered with the DVD movie I always wanted to watch. The premeds will also contain a steroid, and as soon as the Benadryl wears off the steroid will take over and he'll start to feel energetic and probably hungry as a horse. For me, that effect lasted through most of the next day as well, then the fatigue set in the third day and lasted through the fourth and sometimes fifth day. I could still function, but a nice afternoon nap was a must.

With the modern premeds as well as prescriptions to take at home, nausea is not nearly the problem it used to be. I never had the slightest bit of nausea. On the other hand, getting tired, especially since your husband is getting radiation too, is pretty much of a sure bet. The only question is how bothersome it will be.

This driving may sound trivial but it is an important issue here.

It's NOT a trivial thing, anywhere! Just go with the flow, and you'll both be fine. Aloha,

Ned

[Patti B]

Snappy -

I was actually surprised on my first chemo on how good I felt afterwards. Of course, everyone is different and I have never really had a problem with nausea (thank God). Hopefully that will be the case with your husband. I have not had radiation so I can not answer that question.

I will tell you, however, that I always have a driver with me only because of the Benadryl that is given to me as part of my pre-meds. I usually fight not to fall asleep in the chemo chair and I also usually nap on the way home. I pesonally would feel uncomfortable driving home as sleepy as I am for several hourse after the chemo.

Once again, everyone is different so you probably need to play it my ear for the first couple of chemos to see how he does.

Hoping you and your husband the best.

Patti B.

[Jyoung20]

I can only tell you what my experience was like and as you said everyone is different.

Some things to be wary of:

Here are my Survival Tips for a Lung Cancer Survivor!

Everyone is different!These things may or may not happen!!

He will most likely lose his hair.

The radiation will most likely cause some eating issues and burning sensations (they have a magic swizzle to help with this)

He needs to try and keep his weight up no matter what!! Eat, eat, eat

He will most likely experience fatigue and nausea

Try to encourage him(if this happens) to not stay in the bed but to try and be as active as possible

Get the pain management and/or breakthrough pain under control

How I dealt with everything:

Every time I would get a treatment I would visualize it going in and destroying that cancer and every radiation treatment I imagined GOD pulling the cancer right out of my body. At night, I would listen to meditative music to help my mind think of absolutely nothing..

Even though I didn't really feel depressed after the initial month, I took lexapro as a precautionary measure

I found a network of friends who were dealing with the same things that I was dealing with (as you have)

Read books about survivors!! Richard Bloch's book "Cancer, There's Hope and Fighting Cancer"

Here is a website for the R. Bloch foundation--http://www.blochcancer.org/

The fortunate thing is that they are able to treat the cancer with an aggressive approach. The bad thing is that it is may be hard on him.

I think it's okay to be wary about him being sick. Stay on top of it and if you see anything out of the ordinary, I would call the doc immediately. No symptom is too small...Lung cancer is a VERY sneaky disease and we have to be Pro Active in our own healthcare.

I had combined chemo 3 years ago for Stage IIIB locally advanced disease. I am cancer free and living my new normal. Not only that, I can jog a solid 2 minutes without stopping...woohoo This is doable and I would do it again if I had too.

Remember that this treatment is only temporary and it will get better

Prayers for you as you begin this new journey. Please let me know if I can help!!

I hope this helps!!

God Bless,

Jamie

[Connie B]

I didn't get sick with my chemos. I felt a little nausea for a day but that was the day after chemo. That's all I got in the line of sickness.

I also did radiation treatments with my chemo, but I never had any problems with radiation either. Other then some radiation burn on the chest and some swollowing problems down the road with it.

I did drive myself the last two weeks. Should I have???? NO!! Looking back at it, my brain was in somewhat of a fog during the chemo treatments, because chemo can do that! It's called CHEMO BRAIN!

(don't panic) it's nothing crazy but it is real. We get a little forgetful, and we don't concentrate well, etc., things as such. I just don't think driving ourself is a good idea.

Yes, some people do get sick (throw up) on the first day, (NOT MANY)! It usually comes a day or so after (IF THEY EVEN GET SICK). That's the object of taking all those anti-nausea meds. So he doesn't get sick.

Don't get yourself all worked up over this. Think FLU like symptoms if your going to think anything. You would be surprised at how many people DON'T get very sick from treatments.

Oh, and when I did radiation to the chest, it only took about 5 mintues. What are they radiating that is going to take 30 minutes in time?? Doing the radiation isn't painful at all. You lay there for (I laid there) for 5 minutes, the machine went around shooting in the radiation and that was it. Kind of like taking pictures. But I never was in there for 30 minutes. The first time (getting marked) for my radiation took about 45 mintues,but that was when they were marking the spot or spots.

That takes some time.

Best wishes,

Connie

[jaminkw]

Like everyone says--treatments are different for different folk. I almost always had some degree of naseau usually two or three days to a week as the treatments progressed. Moving about a lot seemed to increase the naseau so I learned to do things in small doses. I typically got up at 3 or 4 am and after the first few infusions found it nearly impossible to nap. That meant I was usually falling asleep on the couch (still am after infusion 6) at 6 or 7 pm.

It's good not to hover but what helped me the most was evidence that my husband was observing me, usually without a word. That way, if I found myself blurting out "I really don't feel good," he would typically respond with something like "I know honey, I can see it when I look at you." Be there for your husband in an immediate way whenever you can (really seeing him and hearing what's going on with him). It won't alwyas be possible cause you're human too but being heard and understood even from time to time goes a long way.

Probably the best advice in my experience as the cancer patient, when he's cranky just be very quiet and it will pass. Your intentions sound so good, I'm sure you'll do fine.

Judy in Key West

[Judy-OK]

Hi snappy!!! I had carbo/taxol once a week and radiation 5 days a week for over 7 weeks so it sounds like your hubbie and I were on the same treatment plan. I drove myself for every single radiation treatment and actually think maintaining some of my independence helped me through the process. I was NEVER to tired to drive but the walk from the car to the radiation area took me awhile to accomplish near th end of treatments but I just took a lot of short breaks and allowed myself time. I drove myself to my first chemo and they requested I have a driver so I had to call someone to come and get me. They said I could drive myself if I did not want the Ativan in my chemo cocktail ... I wanted it so I got a driver. I never took any type of anti-nausea medication before, during or after tretment and did just fine. I even managed to keep my hair. The radiation caused quite a nasty burn on my skin and some internal scarring that I deal with still. I think Joe will do just marvelous and don't hover over him unless he is the kind of person that thrives on that kind of attention.

[Tom K]

I also had similar treatments. I drove myself to and from the radiation treatments 4 days a week and my wife drove me on the day I had chemo (the Cancer Center insisted I have a driver). My experiences with chemo were just like Ned’s; sleepy while I was receiving it ( because of the Benadryl ) then wired for a day and a half with the steroids. One of the pre-meds I received was Aloxi for nausea. It worked great and I never had any real problems except hiccups which would show up about 2 days after chemo. After 4 weeks of concurrent chemo-radiation, my energy levels dropped noticeably and I would take naps just about every afternoon and still sleep 8 to 10 hours a night. But I was still able work 6 hours a day (I would take off early every day and get radiated on the way home). Your husband’s treatment is difficult but doable.

[kathytoma]

Driving: I always had someone with my husband, it helped his spirit. He could have driven himself for maybe 2 treatments of chemo but when you do radiation every day that makes it tough. He knew he could not drive anymore and he was ok with that, so after 2 weeks I drove him to radiation every day and then went to work.

As you have notice everyone is different but in our case it was not good for chemo or radiation, and he was healthy as a horse before this demon attacked him. So we pulled together as a family and did all we could for him, did he whine, a little, but we told him we are your strength for the time being, since he had also been the strong one, now it was our turn. I always joked with this macho man and said, "let me see your chest, and he would say "what" and I would say let me see and he would open his shirt and I would say"where is the big S" and he said,"What", and I said, " The big S is for superman and right now you cannot be superman, just sit back and enjoy the attention.

God love him, he has been wonderful and so strong and continues to be.

Take care Snappy, and I will pray for you all, it is a roller coaster, just hold on tight and pray.

Kathy

[jaminkw]

Snappy: Take in all the information and follow your instincts in responding to your husband. I would hate for anyone to feel like less if they couldn't match the super-strong in handling this disease or the sometimes nasty treatments. They keep us alive but are not always a walk in the park for everyone.

Judy in Key West

[snappy]

These profiles are great information, I just have to get used to reading and not missing anyone's post.

Jamie; Thanks for all you included. Helpful input. Most of those I heard. I will have to remember about the swizzle. Joe likes to eat normally and he has extra weight to start. Other than nutrition he can afford to lose some. We have been advised to notify of any sudden changes. Did you really mean 'jog a solid 2 minutes'??

Connie; We probably misunderstood about the 30 minutes radiation. The other appointments were that long. Dry run and tattoo.

Judy in Key West; Very good advice on a different level. Tom's post is encouraging. Judy-OK, thanks for the input. Joe is not one to hover over.

Kathy, you got our story. My husband cares for everyone. Now the table are turned and not easy for the patient.

TODAY: Radiation went okay. So much for having asked any questions previously. Didn't do well with the Chemo. I understand the experience was frightening. Joe said he was feeling a strange feeling inside, SOB, and apparently turned very red and suddenly had the attention of many as oxygen was put on for about 30 minutes and whatever else they do. I said "you were in trouble, huh?" He said 'yes'. I really didn't expect that. We were told at the chemo class that there has to be a doctor nearby whenever there is a new person starting.

Ned said:

The allergic reaction comes on rather suddenly, while the drug is going in, and causes problems with breathing, pulse, blood pressure, or other vital functions which require immediate attention. I believe there's a rule -- at least there was at my clinic -- that for the first infusion an oncologist has to be present within the facility, not just on call.

Needless to say, this was off to a bad start. He had a reaction to the Taxol.

He was in bed now for hours, trying to get rid of a bad headache. After being married over 46 years you get to know one another. If he is in bed during the day, there is something wrong. He had this headache before he left for radiation this morning and so we are not contributing it to the treatment. However, I wonder if it could be from the Dexamethasone that he took 12 and 6 hours before chemo?

They have set his schedule better on the Monday Chemo days. He will go to Radiation at 7:40 AM and Chemo at 8 AM on Mondays. Good thing he didn't drive. I picked him up and he did not feel like driving. I thought Joe said they were going to change the Taxol to something else.

He just got up and it is 6:30PM and said no headache. I have been trying to get this together and need to go visit now and see how he is.

I really do thank you all for your time and efforts. I am sure some of you were beginners once and it helps to get it from the people that have been there.

[Patti B]

Snappy -

I had a reaction to Taxol on my second cycle and they changed it to Taxotere which is a milder form of Taxol. Had no problem with it and still had tumor shrinkage.

Give hubby a hug and you hang in there. Let us know how it goes.

Hugs to you both - Patti B.

[Connie B]

Oh Snappy, I'm sorry Joe had a mishap today with chemo. I'm going to hope in part anyway that maybe his nerves got the best of him as well. Starting this journey is VERY SCARY! I will NEVER forget my first two weeks of this journey, or the rest of the weeks that followed!

When I went into the chemo room, my hubby and I would walk in and say over and over, "I can do this, I won't get sick" Then we would smile and I would do my chemo and all went pretty darn good.

Does Joe do his chemo with other patients in the room? If so, that really helps to lesson the fear a little because others know what new people are feeling and they can help make him feel better.

I had about 6 people in the room with me doing chemo when I did mine. I found it very comforting to have others in the same boat. Over that time we all became good friends, and some of them I STILL talk to.

I'll keep my fingers and toes crossed that the only bad thing Joe gets out of this is a headache.

Best wishes to you both,

[recce101]

Bummers! In addition to Patti B, there's someone else I recall who had a reaction to Taxol, then switched to Taxotere and had no further problems. I'll see if I can find that post, or maybe she will check in. Aloha,

Ned

[snappy]

Joe does do the chemo with others. Actually, he said there happened to be a nurse doing something with the patient next to him and she saw his reaction and turning all red and immediately called for help. This was not from any kind of nerves. He pretty well knew what to expect. He & I had seen the chemo room on chemo class day.

Joe does not do medicines well anyway. Never took a lot either. Not a lot I can do to help him and so I am taking on the phone calling at times as his spokesperson. He agrees. I am calling tomorrow to find out if what he understands is correct and why. He says that they will figure out what other medicine to use when he sees the doctor but that will not be until March 14th.

If the delay for the meds is just because Dr is out of town, this is no longer acceptable to me. That happens to us too much. Maybe it is not a problem but I need to find out now. It is a big office with lots of doctors and PAs too I think. Surely, he doesn't wait on one part of his treatment because Dr. is out of town. I hope Joe just misunderstood, or that the medicine can wait.

Thank you all and I got some real good information. Unless I get a specific question I should be okay until next treatment.

[jaminkw]

Snappy: You would do well to check on that delay. It's good to hear you say it's not acceptable. It means you and Joe are taking charge. I always remember my second chemo nurse telling me people can't just lay back and say "take care of me" (obliquely referring to the guy who got treatment next to me after he left). She offered educational info she put together herself and stressed that patients need to take charge of their cancer. I am at a top notch facility but glitches happen. It hasn't always been easy but I've never regreted taking charge and insisting things be done the way the doctor wants them done.

Here's wishing you smooth sailing from here on. Keep us posted.

Judy in Key West

[SandraL]

Hi there. I know how you feel. You do not know what to expect and wonder what will happen. Everyone reacts differently for sure. I did not suffer too badly from radiation or chemotherapy. With radiation, very much depends on where they are radiating. The attitude I took though, was that they tell you all the possible side effects...but I decided I was not going to suffer from them. I think attitude can play a big part. On the other hand, some people are just more susceptible to side effects. And you just have to go with what you get and deal with it as you can. Really watch out for that nasty constipation thing...get on top of that as quickly as possible...think it is mostly from anti-nausea meds. Drink drink drink...and follow constipation protocol.

[snappy]

I am very happy that I am just becoming aware of just how important it is to be proactive.

I called the Oncology office today and talked to the Triage person. I told her what Joe was told. I asked if another doctor couldn’t say what to give Joe. She said wait until Joes’ Dr gets back. I was being nice. I even told her that I was trying to be nice but we have had too many delays. I was not speaking bad of anyone but we had to wait for the Heart Dr to come back to go over the Stress Tests and then we had to wait on the Pulmonary Dr because Joe wanted to talk to him about the Needle Biopsy and he was gone. We kept getting put off and delayed.

I proceeded to ask her “and we are expected to wait about 2 1/2 weeks to see what medicine Joe will be getting?”. Dr himself said he didn’t want to wait past 2 weeks or 3 at the most and this is week 3. I told her this is all new to me and I know very little about cancer and I then told her that if she could 'explain to me' that it is okay to wait for him to start the medicine then I would accept that. It all went something like that.

After I asked the above question, I was put on hold, she came back, told me they would call the Dr and get back to me. Wasn’t long and I was told that he is having Joe now use what I thought she said Parotere. I think the P was maybe a T that I didn’t hear right and I forgot to put the line thru my x and looked like an r. That would make it Taxotere which is a chemo drug. I had gotten a little nervous by then. I am not used to making this type of call. I have a big motivation and interest in this treatment. I also don’t want to make waves. Joe has said that everyone there is very nice and they were the day I was there.

Today he got a warm feeling around his head and some symptoms that were questionable and he talked with the woman on the phone about the time I was done. She had him take his temp. In the end she decided to have him stop in and see the Dr in the morning. I felt like saying but which doctor. She felt he is okay but better check him. We think it is just the meds working probably.

BTW, we know why the doctor isn’t in. (He is having twins). Don’t know who told Joe that. I thought he found out at Radiation.

One other thing that didn't set well with me. I asked her if they don't get another doctor in this dr's absence. She said "we did and that is what he said to just wait until he gets back".

I don't know any of this. What kind of answer is this in your opinion. It sure goes against what I am thinking. We didn't get the exact dr we were referred to but we were told they are all good. The one we got referrd to is the one she named as saying to wait.

Thanks again for being here.

[jaminkw]

Snappy: I'm up with the chickens again and went to check your post. I can hear your fear and frustration at Joe's delay in treatment. I was looking over his profile again and it sounds like there were delays getting to the treatment and now more. I don't know where you live or what your options are financially for a second opinion but I do know it's important to trust the doctor. As hard as it sounds for you to assert yourself with the doctor's office, it sounds like you're fighting against Joe's fear of you making waves.

Waiting is the worst. For me it was finding a good hospital who would take me in and finally getting a diagnosis. I don't have any great ideas so early in the morning but it seems to me if I did have to wait another couple of weeks, it would help if I were finding a second opinion for Joe or otherwise finding more information about his possible/probable treatment. I'm still new to this but these people appear to have a wealth of knowledge. I'm sure they'll be kicking in soon.

Hang in there.

Judy in Key West

[Muriel]

I don't know how I missed this post, but I did. Looking at everything that's gone on, it seems as tho. Joe's "cancer problem" probably began in early Sept (almost 6 months ago)and that they must have discontinued the Taxol when he had a reaction to it. Since no one will see him until Mar 14th, that will be 6 and a half months before treatment really begins. IMO, that's too long.

You haven't mentioned where in AZ you live or if there are any other options for treatment. I think it's important that you get a second opinion re: treatment. I would seriously consider finding a new Onc. since that practice can't be very responsive to Joe's information or treatment needs.

Good luck

Muriel

[snappy]

I just popped in but cannot stay. I thought maybe I have confused you and want to clarify. I can confuse people as not the best at putting things in writing.

Joe's treatment was not 'stopped' but when he reacted to the taxol, they were stopping it until the doctor came back. Would still take the other chemo drug.

That wasn't acceptable to me because everyone seemed to have it replaced if reacted. I didn't want any more waiting for him to be treated.

Making waves, that is me. I want them to do what they should but I don't want to get on their bad side either. I do think they are a good group. I can respond more later today. Just wanted to clear this part up. They have been very good with exception of this. As for the doctor, have only seen him once.

[jaminkw]

Snappy: I think I've got it--Joe had the reaction on February 25 and they stopped the Taxol and continued the other chemo drugs. Now they want to wait for the doctor (or perhaps the next scheduled infusion?) before they give him a substitute? It's not exactly the same, but the first time I was supposed to get Avastin I showed protein in my urine. I had to wait a few days to see a urologist who cleared me but I didn't get the Avastin until the next regularly scheduled chemo in three weeks. It bugged me too--I experienced it as a setback or at least a limitation to the benefit I might have gotten with all three chemos on the first shot. But fast forward a few infusions and they held Avastin again because they needed to test for bleeds. Now that time, they did the test and cleared me and had me come back the very next day to do the Avastin. I don't know but maybe they don't think the wait is a big deal when they are starting a treatment regime but do once it's underway. I'm just guessing.

Judy In Key West

[recce101]

I think I'm a little confused too about the current status.

As I understand it, Joe is going in this morning (Wednesday) to have "warm feeling" and other symptoms checked. What's not clear to me is when the chemo (probably with Taxotere substituting for Taxol) is to be redone. I assume the infusion was stopped when the Taxol reaction occurred, and that usually goes in before the Carboplatin, so that means he has received no chemo so far (the premeds don't count).

The combined chemo/radiation program he's on is based on getting both, since one complements/enhances the other. Another person I know of who had a Taxol reaction went back in the next day for a successful re-try, this time with Abraxane, which like Taxotere can be substituted for Taxol. So if Joe is getting the chemo redone today, or maybe another day this week, that's great. But anything more than that would be troubling to me.

Aloha,

Ned

[jaminkw]

Snappy: Ned made an important point. Taxol is given first so when it was stopped, Joe proably got no chemo. I only got two of three, and as Ned points out they're supposed to all work together, but I have to think two was better than none!

Listen to the seasoned survivors, o.k.

Judy in Key West

[Judy-OK]

This probably has little to do with nothing but I was hospitalized with a collapsed lung after they installed my port. For the 5 days I was in there they would come up and get me with all my appartuses in tow which included the machine that was letting my lung reinflate plus the oxygen that kept me breathing along with all the hoses and cords and take me down for my radiation treatments. My chemo was administered in the same building as my radiation but they were not concerned about me missing my chemo like they were about my radiation. They could have simply walked to my room inserted the needle and hung my chemo bags but they said is was not a critical thing. It seems like once they start the radiation they are pretty adamant about not missing it.