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Shortness of Breath

Jennjallen67's picture
Jennjallen67
Posts: 22
Joined: Feb 2012

My husband has recently been diagnosed with SCC Stage IVb. He has a tumor surrounding his coratid artery the size of a baseball. Surgery is not an option. He starts chemo and radiation on Tuesday 2/21/12. This is his second time around. He had SCC Stage II in 2006. He received 33 radiation treatments and had been cancer free. My question is, he sometimes has shortness of breath. It really freaks him out. It usually happens a lot in the morning and periodically during the day and doesn't last long. When we bring it up to the doctors, they always say that it is normal or just may be anxiety. Have any of you had this experience? Also, he had a chest x-ray before his biopsy to find the primary source of cancer, and it showed questionable nodules. It has been recommended that he get another CT scan to see if it is cancer. But none of the doctors seem to think it is a concern right now. They are more focused on his current treatment plan. Do you think this could be related to his shortness of breath?

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

I can't offer you much as for the symptoms you mention.

I'm sure all of the things you mention could be inplay concerning the shortness of breath.

I was STGIII SCC Tonsils...hopefully the chemo depending on his treatment plan will reduce the tumor.

For myself, I also had a secondary tumor to the primary (tonsils). That tumor actually dissolved away during the chemo I was receiving. So in that respect there is always hope.

Here is a link compiled of many topics and information gathered by many of us along this journey.

SUPERTHREAD

Dawn (Sweetblood22) keeps it up and reposts it every few weeks so it stays on the front page of this forum.

Many thoughts and prayers coming your way for the best possible outcome.

Best,
John

Jennjallen67's picture
Jennjallen67
Posts: 22
Joined: Feb 2012

I have read a majority of the SuperThread.. Very good info. I have literally been on the computer researching every aspect of his condition and possible treatments, since we first discovered the lump. I am hopeful that the tumor in his neck will go down fairly quickly. His medical oncologist said we should see a signigicant reduction after the first cycle.

My husband in on here as well, Buellman91, though he has only commented not asked any questions. Again, thank you for your comments. We welcome any advise you can give us.

Jenn

longtermsurvivor's picture
longtermsurvivor
Posts: 1819
Joined: Mar 2010

How all these other pieces fit on the puzzle. I'm sorry for the situation you two find yourselves in. I've been down the road of several throat cancers myself, and I can tell you what you already know-- it isn't any easier having traveled the road the first time. No way around it, the fight is going to be there for this second time.

There are many causes of shortness of breath. Heart problems, lung problems being among the more common. Shoot, for that reason, he's certainly got a reason to have shortness of breath from anxiety as well. The odds of smaller lung lesions causing shortness of breath are fairly low.

I guess I can understand the doctors wanting to prioritize his cancer as their number one, but his symptoms may dictate some more work be done on the short of breath thing sooner, rather than later. Even if not life-threatening, the discomfort he has with this might make them need to do some additional work-up.

If necessary, I'd simply tell the team he needs more evaluation/treatment for this problem, as it just isn't tolerable to him.

Welcome to the board. Sorry you have to be here.

Pat

Jennjallen67's picture
Jennjallen67
Posts: 22
Joined: Feb 2012

Thank you for your advise. I will keep bringing it up to the doctors until I get a concrete answer.

The second time around definitely does not make it easier. It has actually been much harder. The first time he had his toncil removed and radiation. He did not even stop working so our life stayed pretty normal. This time we didn't catch it until it had metastisized. At first they couldn't find the primary site. They don't believe it is a recurrence since it has been 6 years to the day from the first diagnosis.

Chemo is new for us as well. He will be on Cisplatin. How bad is the nausea?

Jenn

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

I'm really tempted to ask your doctors if they would consider it normal for THEM to have shortness of breath several times a day. .. .

Based on a quick internet search (and some odd things floating around my memory): Vagus nerve stimulation can cause shortness of breath. The carotid artery is just in front of the vagus nerve. My thought - could the tumor be impinging on the vagus nerve at times? In which case, I don't think there's much to be done, other than shrink the tumor. Vagus nerve stimulation can also cause blood pressure to drop and the person often faints, so it's something to be aware of (like, sit down immediately when it happens).

It sounds like the doctors don't think the nodules are causing shortness of breath, and they probably think that the baseball tumor is more important to treat right now. Still, you might talk to whomever recommended that he get another CT scan - knowing the nature of the nodules might help with treatment decisions.

Lastly, no matter what the cause, one concern I'd have about periodic shortness of breath is that it might make it hard to determine, once he starts chemo, if he's having his "normal" shortness of breath, or if it might be due to PEs caused by the chemo (we did that one - discovering PEs is always best done sooner than later). You might have been warned about symptoms of blood clots the first time around, but it wouldn't hurt to review them again with your doctors and ask for guidelines on when you run to the ER for shortness of breath and when you don't.

Good luck with the treatments on Tuesday - I do hope they have a big effect fast and your husband starts feeling better soon.

Jennjallen67's picture
Jennjallen67
Posts: 22
Joined: Feb 2012

Thank you. This is really helpful. Since he has his first chemo treatment on Tuesday, hopefully he will notice a difference by the end of the week. The medical oncologist stated we should see it reduce fairly quickly.

I will definitely ask about blood clots. They have not told us about this before.

Jenn

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

Blood clots are certainly a side effect - Doug developed them in his leg and didn't think much of them, as he was active and just thought it was an old injury acting up. His PT person thought different and demanded tests - they found clots in the leg and then in both lungs (he'd had no breathing issues - he'd played hockey the night before!). It's a pain - you either go on coumadin and get lots of blood tests or you do daily shots.

Nausea for cisplatin varies - our doctor said folks who get motion sick easily have the worst nausea and folks who smoked or drank a lot in the past have the least. They will likely give him something to take the day before and the day of, plus some other things to take on a schedule for the next week. Don't miss any, no matter how well he feels. Some folks get bad hiccups, both from the cisplatin and from one of the anti-nausea drugs (dexamethasone). They do go away after a few days, and switching to thorazine instead of compazine for nausea can help.

You read lots of hints on the superthread, so I will just underline one: antinausea drugs tend to cause constipation, and the decreased fluid intake due to nausea and throat pain complicate this. Consider including Mirilax and Benefiber (or the generics) in his daily routine as long as he can take fluids by mouth and keep them down. Again, according to our chemo guy, constipation can sometimes be the worst side-effect (getting rid of it is certainly much worse than preventing it).

Good luck Tuesday - we'll be thinking about you then.

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

I had Cisplatin, Taxotere and 5FU....everyone is different, you'll here that concerning nearly everything here.

For me, I didn't have any severe or extreme reaction. I did have a few minor;

Lost hair (returned starting around week 6- 7)
Lost my toenails...a little weird
Hardly any nausea (Emend is great)
Hiccups (meds got rid of them)

Onething to stay up on, and I can't stress enough is hydration....water, water water...oh, and then some more water.

A lot of things to watch for, but they should give you sheets on possible side effects...

Tinnitus
Neuropathy
Kidnet samage, but that should be monitored with blood tests the day of each chemo...

On the seconary tumor I had..it was noticeably smaller after the second round of chemo, completely gone by the third round...but my tumor was only the size of a small grape.

Best,
John

Noellesmom
Posts: 1306
Joined: Aug 2010

First of all, don't just keep bringing up the shortness of breath, Jenn, DEMAND the doctors determine the source. There IS a source, even if it is anxiety.

It would be ridiculous for them to put your husband through anything until they determine the cause for a symptom that could have a life-threatening basis.

As I know Dr. Mary has shared, we are our patient's advocate and if something needs to be addressed, we must make sure it is.

Vagus nerve, blood clot, anxiety attack - we don't have to determine what is wrong - the doctors do and sometimes you have to get pretty tough with them.

Agree with John about the Emend - my husband had almost no nausea and always had the Emend before chemotherapy.

galeh
Posts: 3
Joined: Feb 2005

My brother died a week ago and his only symptom was shortness of breath. He was being treated for heart disease. He had a bypass operation about 3 years ago, however the only thing he was having trouble with since the surgery was shortness of breath, no chest pains, no nausea, etc. The doctors only added a medicine, with no further investigation, about 2 months ago. He went back to doctor a couple of times, with no improvemant, only getting worse. He seen a doctor on Friday morning, he discontinued the new medicine, sent him on his way. We buried him Saturday. The EMTs made some mistakes but that's another story. DON'T make the mistake of being too pushy with the medical folks. Many of them need to be pushed. Switch doctors if necessary, but demand a diagnosis for the shortness of breath. Right now it outweighs all other factors, because you can't get your cancer taken care of if you are in the ground.
Sorry for your troubles, and hate to sound morbid but I feet desperate for you to get help before its too late.

Jennjallen67's picture
Jennjallen67
Posts: 22
Joined: Feb 2012

Thanks everyone. He says the shortness of breath wasn't as bad today. But, then he had other issues to think about. His peg tube had been pulled in to far and was giving him severe pain. He visited the doc and they have fixed and he feels a lot better. I'm hoping that it is just anxiety, but I will make sure he gets the CT scan. We have the script for it, he just needs to confirm with the Radiation Oncologist when the best time to get it done is. We start chemo and rads tomorrow. Wish us luck!

Jenn

longtermsurvivor's picture
longtermsurvivor
Posts: 1819
Joined: Mar 2010

You've got a plan, and you've got the right attitude. You're going to do fine!

Pat

HugheyRB's picture
HugheyRB
Posts: 15
Joined: Jan 2012

Have your primary care refer you to a Pulmonary specialist and have them give their opinion to the Oncologist. God Bless and keep you both.

HugheyRB's picture
HugheyRB
Posts: 15
Joined: Jan 2012

Had multiple issues including diagnosis that drove up blood pressure and anxiety was prescribed low dose Xanax, it was effective within 5 or so minutes with calming.

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

Sending them your way, along with some battle armor and warrior spirit....

It's just the process that we all go through, you guys will find your way through it as well. If you haven't thought of it all ready depending on how long you're going to be there, pack a lunch.

That is one of the things that we didn't think of our first day. Come around noon when we were there for a full day. All of the old timers, pulled out there eats, and I was starving smelling their food.

Another tip....sit close to one of the restrooms if you have the opportunity. You don't understand my reasoning at the moment...but you will. Especially as soon as they start hydrating you, and pumping lasix or similar in you to start flushing the kidneys.

Let's just day that I was labeled "The Pee King", my first day there, LOL....

Thoughts and Prayers,
John

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

I am truely sorry for your situation and especially the loss of your brother....and I'm not totally understanding the entire story concerning your brother or if and what type of cancer he had. But apparently he had been confirmed with heart disease or illness, which as far as I know the original poster has not.

But at the same time, I think that your post, while I'm sure that your head and heart are intended to be in the right direction, I can only think that your post might cause a little undue anxiety.

Granted the shortness of breath issue with the original poster is nothing to be taken for granted.

While I'm not unaware that bad things happen to people, when I was in treatment or having symptoms, the last thing I wanted to hear was non-positives.

Again, I'm truely sorry for your situation, and I'm sure that you are just trying to spare someone the pain that you have went through.

Thoughts and Prayers,
John

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