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advice needed - we were given chemo options

arjenkins's picture
arjenkins
Posts: 36
Joined: Nov 2010

Hi everyone,

Dad met with the oncologist today to discuss chemo. To our surprise, they gave him 3 options. 1)standard radiation and 3 cisplatin tretments (std care) 2) radiation and cisplatin weekly which i guess is a lower dose and 3) induction chemo of taxotere-5FU-cisplatin.

She said the induction is very hard on kidneys and so is cisplatin in the 3 doses. She really worried my Dad and he has tentatively opted for the radiation for 7 weeks with weekly cisplatin (lower dose).

Does anyone have experiene with radiation and weekly cisplatin? does anyone know any difference among the three options. The oncologist said there is no difinitive outcome differences.

I am confused and anxious as I want to make sure we choose the best option to get rid of the cancer.

The reason inducton chemo was given as an option is due to cancer in a lymph node in the lower neck.

please advise

thanks
Andrea

luv4lacrosse's picture
luv4lacrosse
Posts: 1398
Joined: Jul 2010

I chose the 30 days of RT and the 3 doses of Cisplatin at 3 week intervals. I was told this was considered to be the "heavy hitter" of treatments. I also see that allot of people have had the induction treatments that are every day, and I am guessing the Doctors felt that was the best type of approach for the cancer that they had. I will say this, I am 8 weeks post treatment today and am still feeing the ill effects. I would not have changed my mind regarding the treatment based on the side effects as I truly believe the Docs. threw everything they had at it.

Always remember you are entitled to a second opinion if you do not feel satisfied with the answers you are receiving. What is your comfort level with your Docs? If you are comfortable with everything they are suggesting, I would then do what they say.

Mike

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Andrea,
Very scary for your dad to be in charge of his treatment decision when he's not a professional. Was for me, too. I actually had a gut feeling of which way I should go, then asked my medical oncologist what he would say if it were (God forbid) a family member of his up on the table. I have heard that the TPF induction can be hard on the body, especially the kidneys. I ended up doing your option 3, then your option 2 (with carboplatin instead of cisplatin, since I had just done cisplatin). Since I was a newly diagnosed diabetic, my nurses kept an extra close eye on my kidney function. My kidney function is fine - it was fine throughout treatment. Some people do experience compromised function; not sure how prevalent it is. It's a very tough decision - trying to decide how much treatment will get the job done, with the understanding that added treatment options means added treatment side effects, and added trauma to the body. while I've done well (at 8 months out now, very few mild lingering side effects which I believe are fading), I did have times when I felt really bad. There are folks on this site who have had a much rougher go of it. We can't say without a doubt how our bodies will respond to treatment. I went in as a generally very healthy person (oh yeah, healthy except that cancer thing and diabetes and obesity). I wish you and your dad well - I remember agonizing over deciding how lay out a treatment plan.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I received Cisplatin two days a week in 3 week cycles and 35 radiations treatments. I was being treated for 2 different types of cancer (larynx and lung) at the same time. I saw signs of improvement after the first Cisplatin and am now in remission for both cancers.

Unfortunately I can not give any advice on the other two options but wanted to let you know that option one worked wonders for me.

Good luck with whichever option your dad choses. He will do well!!

My best,
Glenna

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

Glenna,
I think I have seen you post on Lung board also. I was just curious if this was your first occurrence of these cancers and which is considered your primary. My husband also is dealing with tongue/throat cancer that has now spread to lungs. Unfortunately, he can no longer do the radiation route. It was just suggested that he do chemo with cisplatin and taxol. When you say that you saw improvements after first treatment, what areas were the improvements in?
Thanks,
Debbie

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

How much does/did your father drink? (This can affect cisplatin side effects.) Is he prone to motion sickness?

Where is the primary tumor and what part of his head and neck will be targeted in radiation? Do you know the cause of his cancer (genetics, lifestyle, HVP, they don't know, etc.)?

Why are they worried about his kidneys? Has he had trouble with them before? Has he ever had kidney stones (and if so, do you know the cause)?

Goalie's picture
Goalie
Posts: 184
Joined: Sep 2010

OK, the Technical Director for the project (my wife) has asked me to write in about our recently-concluded treatment (last Friday).

For the record, it was a primary HPV+ Right tonsil tumor which, when –ectomied, was found encapsulated and not spread to the general throat (yeah!). However, it had jumped one inch to the adjacent lymph node (whose enlargement was what first put us on to it). Given this fairly restricted problem, the docs’ course – which we accepted - was 42 RT and 3 chemos (cisplatin) at wks 1, 4, 7. Essentially, this was 8 ½ weeks of RT (TG Day off) with the first 28 being more general including the left side some, and the final 15 being very very directed at only the Rt lymph node. The node itself has shrunk to almost nothing and we feel good about this pending all the test, etc. These RT were fairly straightforward and as expected (still recovering).

The interesting thing, however, was with the chemos. The first one went OK but packed a wallop as expected. Days of hiccups, etc. but it seemed recoverable perhaps because I hadn’t yet had much RT. By the time of the planned second, things had started to go wrong and between the appearance of blood clots in legs and lungs and then low white cells, it was postponed a week to wk 5. We followed with a different follow-up drug regimen to the chemo hoping this would lighten the blow. It didn’t and this time was much worse than the first. It put me into a tailspin that lasted a few weeks and resulted in loss of about 35 lbs overall (though this started before as well) and weakened me greatly. In the end, the doc decided that the safest thing was not to put me through another bout and to stay at just 2 doses. He also said that this 2 or 3 were both within the accepted standard of care and that it likely wouldn’t make a difference given that the chemos were, in this case, the helpers, not the heavy lifters on the cancer. In the end, given all that happened, I would gladly have forgone the second one and taken my chances.

What is my point? Mostly to give more info on why my wife was asking the questions and also to back up the points of others to ask why for each procedure and what is the additivity?

Doug

(Note: the posts below are much better than this! Congrats and thanks.)

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Debbie,
I guess you could say that both my cancers are primary as they are two completely different types of cancer, not mets or reoccurences. I have Non Small Cell Adenocarcinoma in my left lung and Squamous Cell Carcinoma of the larynx.

I was having severe pain on the left side of my throat but only when I swallowed and constant pain in my left ear. I had also lost my voice almost completely and had started coughing up blood. They did a CT w/contrast of the lung and then a biopsy. After the lung diagnosis I was sent for a PET which is how they detected the laryngeal cancer. I guess I am one of the unlucky ones who got two different types of cancer at the same time. The laryngeal cancer was the most advanced of the two.

I started chemo, Cisplatin, twice a week in 3 week cycles in June and after my first session I no longer had any pain in my throat or ear and my voice had returned to normal. I asked the medical oncologist about the changes and he said it was because of the Cisplatin.

I hope this helps, if you have any other questions please feel free to ask and I will help in any way I can.

My best to you and your husband,
Glenna

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Sorry to take so long to reply but I had trouble earlier with the spam filter and couldn't post on any forums.

I guess you could say both of my cancers are primary cancers as they are both different types of cancer, not mets or reocurrences. I was just unlucky and had two cancers at once.

I was having severe ear pain in my left ear and on the left side of my throat when I swallowed,I had also lost my voice. I received Cisplatin two days a week in three week cycles and after the first infusion I had no pain and regained my voice completely. I asked the medical oncologist about this and he said it was because the Cisplatin was working. I was amazed that it had that great of an effect so quickly.

I am now 15 months post treatment and still in remission.

Hope this is helpful. If you have any other questions please feel free to ask and I will help in any way that I can.

Take care,
Glenna

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

Thanks Glenna. That is encouraging about the pain going away so quickly. I will tell my husband and hopefully he will take some encouragement from that. Interestingly, he has also had a lot of pain in his ear. The ENT said it was referred pain from the tumor in his throat. I think that is why my husband was so worried when, after the laryngectomy, the pain still kept occurring. He kept telling me that "something" was still in there. I said that couldn't be because the doc removed it all during surgery. But I guess it was lurking in there somewhere and popped back up again.
The doctors had said that it would be rare for an entirely different tumor to occur in his lung but i guess you are evidence of exactly that. Anyway, they are not going to biopsy to find out because they said it wouldn't change the treatment plan. We are hoping to get him started next week on the chemo if they can schedule it that quick. I'll keep you posted.
Debbie

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

As I mentioned in my earlier post, I am 15 months post treatment and 2 months ago I started experiencing ear pain again. Naturally I started to panic thinking it was back. I saw my ENT twice in 3 weeks and he said there was no change and he didn't feel it was anything to worry about, he is keeping a close eye on it though. The pain is not constant as it was before and not as severe so maybe I'm having "referred pain" also.

As I stated also, the surgeon who told me about the lung cancer said the pain in my ear and throat were because of the lung tumor, now I'm curious whether or not that is true. At the time he told me this he did not know I also had laryngeal cancer. The laryngeal cancer was stage T3N0M0 and I believe they said the lung cancer was stage 1a so I think I had the laryngeal cancer developing way before the lung cancer. Just my thoughts as I am not a doctor and can only go by what they told me. I see my rad onco in February and I'm going to ask him if he thinks the pain was from the lung tumor pressing on a nerve or if it was from the larynx.

I hope your husband is able to start his chemo soon, tell him Cisplatin is rough on the body but it works and that's what matters. Also tell him to drink as much water as he can each day, starting now. He must stay hydrated at all times and especially during chemo he will need to drink to flush the chemo from his system, a minimum of 64 ounces daily is required.

Stay well and keep me posted please. I know you will take good care of your husband but you also have to take good care of yourself.

Glenna

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

We (and probably any 2nd opinion doc) would need to know more...

1. What type of cancer and what stage?
2. Metasticized or not?
3. Do you know the primary location with absolute certainty?
4. What did the pathology of the biopsy say and how many path reports were done on the slides?
5. Was there a surgical removal of the initial tumor? Encapsulation?
6. Is there a known cause and/or the aggressiveness known?

Treatments are based on all available data and multiple looks at that data. I take it in your last sentence that this is a stage-IV of some type. One of the things I preach is that an Oncologist can only recommend based on the data that they have in front of them. If you have 1 biopsy and 1 pathology report and go to 3 Oncologists, don't be surprised if you get 3 consenting opinions. Not that it's the right thing to do, but all 3 docs were simply looking at the same data.

In my case the initial path said laryngeal squamous cell carcinoma, stage-IV with infiltration into the neck lymph nodes. So the first Oncologist was calling for weekly low-dose Cisplatin and 35 rads (your option #2). 2nd opinion at Johns Hopkins was based on another path report. That path said NO lymphatic evidence, stage-1 or 2. So doc #2 said surgical removal or arytenoid or 35 rads, no chemo. 3rd opinion was at Wake Forest and had yet ANOTHER path report on both the first set of slides, AND a new set of slides from the original blocks. That path said NO lymphatic evidence, stage-1 or 2. So doc #3 said 35 rads, no chemo and no surgery as the surgical damage would be permanent, ugly and no guarantee that it would be as successful as radiation. (Doc #2 negelected to give me those full facts). Doc #2 was a primary surgeon. They all go to their "comfort place". The head & neck surgeon wants to cut you open. The Oncologist wants to do chemoa dn the Radiation-Oncologist wants to nuke you.

So my original pathology was DEAD WRONG which caused doc #1 - who became my primary Oncologist to revise his recommendation to match doc #3. "I was never recommending chemo out of the box. I was recommendign it if there was any doubt that you had it in your lymphatic system." In the end after 35 rad treatments, I just got back my first post-treatment PET/CT and I am clean and NED! It worked!

So my advice for you (and of course, I'm not a doctor). Review what data the doctor is making these recommendations. Is it enough? To me, THE MOST IMPORTANT QUESTION TO ASK IS, "How much time do we have to seek out more data and other opinions?" Is it aggressive and in the lymphatic system to where waiting could cause more harm than good? If so, moving quickly on a treatment course, ANY treatment course, even if it's not the exact perfect treatment course is the way to go to stop the cancer in its tracks.

The other question to ask is which is the primary weapon in your dad's fight, the chemo or the radiation? Option #2 has the radiation as the primary with the Cisplatin augmenting it. Option #1 has them both acting in their full strength. Option #3 has the chemo as the primary and the radiation as an augmentation. Are we targeting the neck and neck nodes (radiation) or are we really concerned with the entire body (chemo)? Chemo is a drug that hits the entire body regardless of whether it has cancer or not. Induction and a standard 3-dose is a lot more than weekly low-dose which will have almost no side effects compared to the throat radiation. In my case since the final evidence suggest totally-localized and no lymphatic-infiltration, targeted IMRT radiation is all I needed.

You also have to think about how tough your dad is and what he thinks he can take. Options #1 and 3 are a lot more intense than #2. But I would focus on what data this doctor is basing these recommendations and if you have the time, get new data and new opinions. But again, if your doctor says your dad doesn't have the time, don't feel pressured that the decision must be perfect. In many cases, some treatment is better than none while seeking other opinions.

I know this was a lot and a bit rambling. Good luck!

Skiffin16's picture
Skiffin16
Posts: 8095
Joined: Sep 2009

As have several others....

STG III SCC Tonsil Cancer HPV+, I was diagnosed with primary tonsil cancer and seconary of one lymph node involved.

Tonsils were removed, biopsy, and later determined through additional biopsy, HPV+. Power port ws installed, all chemo was infused.

I started first with three 3 week cycles (9 weeks total) of Cisplatin, Taxotere, and 5-FU on Mondays. The 5-FU was administered via a pump 24/7 ending on Thursday night. The following two weeks were recover time.

After that nine weeks, I started seven weeks of Carboplatin (lesser version of Cisplatin) every Monday and 35 daily doses of Radiation. Each day before the radiation I was injected in my abdomen with Amifostine to help retain some salivary function (not sure how well that actually worked).

I am now 18 months post treatment, clean, clear and NED.

Yes, the Cisplatin does come with it's demons. But is flushed with fluids during and after infusion as well as staying properly hydrated during your treatment. It can cause Tinnitus (ringing ears), Neuropathy (numbing fingers and toes), both of which could be something permanant. Communication between you and your medical professionals during your treatment is essential.

While all of these are of concern, so is killing the cancer. So that being your (or my) primary mission, I'm for the treatment that gives more bang for the buck.

That was the protocul with the best results historically at my faculity, and for the type of cancer I had.

Also as a note, usually brings forth a few opinions an comments. But HPV derived H&N cancer tends to respond well to the treatments.

When your oncologist says there is no difinitive outcome differences, is he talking at that facility or through out the medical community? I would have to disagree from what I've read and heard and in my un-professional medical opinion. But like everything else, there are many, many variables, and something you'll hear frequently..."Everyone is Different".

Does your father have any other underlying medical conditions, how's his overall general health. Is there any history of similar disease within your family...all things that the MD's consider.

Wishing you both the best, on your decisions and outcome.

Thoughts & Prayers,
John

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Andrea
My first-cousin is also getting the drugs and delivery that John got, including the Carboplatin with the rads as the 2nd part of his treatment. Seems logical that this may become the new standard for many treatments, as it stretches-out the treatment time and allows more Chemos to clean one's innards. You might want to ask your Onco which he/she would recommend, and exactly why.

Prayers are with your family

kcass

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Andrea
My first-cousin is also getting the drugs and delivery that John got, including the Carboplatin with the rads as the 2nd part of his treatment. Seems logical that this may become the new standard for many treatments, as it stretches-out the treatment time and allows more Chemos to clean one's innards. You might want to ask your Onco which he/she would recommend, and exactly why.

Prayers are with your family

kcass

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Andrea
My first-cousin is also getting the drugs and delivery that John got, including the Carboplatin with the rads as the 2nd part of his treatment. Seems logical that this may become the new standard for many treatments, as it stretches-out the treatment time and allows more Chemos to clean one's innards. You might want to ask your Onco which he/she would recommend, and exactly why.

Prayers are with your family

kcass

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

I had a modified version of treatment option 1. I had three rounds of cisplatin, but my doctor divided each cisplatin infusion over two days; the monday and tuesday of each of the three chemo weeks.

I asked about the effectiveness of induction chemo. My Stanford Doctor said that induction chemo would only serve to make me sicker, and would not contribute to an improved outcome.

I asked about a chemo cocktail, and was told that it, too, would make me sicker with no improvement in overall outcome. The treatment I received was described as the "gold standard" for this type of cancer.

Deb

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Andrea, I was diagnosed with BOT stage 4. Treatment for me consisted of 7 weeks of rads and 3 cistplatin (weeks 1,4,7). I am 4 months post treatment and recently had a CT scan which was clean.

They had me on an IV drip 1 day prior to and 2-3 days after each cistplatin injection and I was encouraged to drink as much fluids as possible and then some. According to the docs, this was to help flush the cistplatin from the kidneys, which is where the chemo drugs tend to accumulate and can cause a fair amount of damage.

They gave me an option of having rads only or rads along with the chemo. I was told the success rate with rads alone was about 50-60%. Combining the rads with the chemo increased that by 10-20%. I didn't want to take any chances and opted for the rads and the chemo. My docs used the same phrase as Deb's doctors, 'the gold standard'.

Also I would certainly ask your docs what is their recommendation. After all they are the experts.

Cheers.

Jimbo

Skiffin16's picture
Skiffin16
Posts: 8095
Joined: Sep 2009

I think all facilities have what has been proven best for them as their "Gold Standard"...

My ENT whom I just visited this week has mentioned to me several times that the protocul that I was on was the one that have produced the best results.

In scanarios similar to mine, primary tonsils, secondary of one lymph node, STG III SCC HPV+, that their success rate has been in the 90% range.

Statistics and numbers don't really mean a lot overall because there is always so many variables.

The only thing that was still bouncing back and forth was which to start first, the seven weeks of concurrent carboplatin/daily radiation, or nine weeks of three week cycles of cisplatin, taxotere and 5FU.

When I had mine, the nine weeks first was what they were doing.

JG

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

I think that it depends if you had the primary removed and neck dissection. From what I have seen people who do not have neck dissection have option 3; because the cancer isn't being removed just melted away. Option one seems less toxic because your body is only getting the chemo three times (weeks 1,5,7 pending complications) and hopefully the surgery has removed all the cancer and the tx is just exrta insurance. Risk factors such as age, smoker hx, and stage are the decision makers.
Go to this web-site and join. goto our type of cancer it breaks it down in logarithm. This is what cancer centers use across the country to help make decisions. Good luck!!

http://www.nccn.org/index.asp

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I didn't have a neck dissection and the tumor couldn't be removed surgerically. My c got melted away by option 1.

Skiffin16's picture
Skiffin16
Posts: 8095
Joined: Sep 2009

Tonsils ~ removed surgically - primary - right was primary
Lymph Node Tumor ~ Chemo - secondary - also right side
Residual ~ right side area and opposite side of the throat ~ concurrent chemo/rads...

John

donna Hoyem
Posts: 5
Joined: Jan 2010

I am a head and neck cancer survivor. I was 50 years old when diagnosed, two years ago. I opted for the 7 week chemo/radiation and it saved my life. Chemo and radiation every Monday, and then radiation every day for the rest of the week for seven weeks. Don't get me wrong, it was not a fun trip, but I made it. Pray for your father every chance you get, when he doesn't feel well, don't get mad at him. Just know that it's not his fault. All you need to concentrate on is being supportive, loving and let him know that you are there for him. Like me, during treatment it was very hard to swallow due to the radiation to my neck. Understand that if your father isn't eating, he's not being stubborn, he just can't swallow without pain. But it will get better. Just love him, and let him know that you don't blame him. He will get better. But most importantly, pray and thank Jesus that "by His stripes" your Dad is healed. I will also be praying for you and your Dad.

skipper85's picture
skipper85
Posts: 231
Joined: Sep 2010

My husband had 35 rad treatments and 7 chemo (cisplatin). He's 63. The first few weeks were okay but it is a cumulative effect. By the last week it was tough and the toughest part was the two weeks after treatment was over. If your Dad will let them put in a feeding tube he will be much better off. Have it done right away before the chemo & radiation starts. There's a much greater risk of infection or complication if he decides to have it done in the middle of treatment.

I also recommend Eucerin for his head and neck area. Apply it liberally and often. Don't use it before treatment. Ask your doctor's advice about it.

Follow-up appointments are very important.

Wishing you and your Dad all the best.

Skipper

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