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Lung mets. Here goes...

KareGiver
Posts: 290
Joined: Apr 2011

Hi Friends,
Back in April 2012, I posted about my 60 year-old husband's possible lungs mets from stage 2, HPV+ tonsil cancer. Back and forth in my mind I have thought whether I should post on this board about our follow up, even PMing friends on this board whether to do this or not. Well, here it is: after biopsy, it was found to be malignant, the same cancer from the tonsil (which was determined to be "pristine"). Initial treatment for this "highly curable cancer" started April 2011.
My husband is now in a clinical trial for incurable head and neck cancer, as the papers state, which we, of course, signed. Chemo every three weeks until whenever - my husband asked "how long," and he was told 7 months without treatment, a year with treatment (and the, "some people do better".} Oh my, is the way I am typing my reaction but many of you will add the words I really said...want to keep this a family friendly cancer blog;)
So here I go...and I DO hope this is still the "highly curable cancer" they hope it was OR Are they finding out that, hmmm, we need to look into this further. Our daughter had the Gardisil vaccination in her early teens and our son, 22 years old (assuming normal college behavior) will get it soon. DO NOT DELAY. Have your kids vaccinated. Our family is devastated by this, but know that "one little cancer cell" can get away.
I have reread this message and know that it is long, but appreciate your letting me share my (our) feelings. Please know I hope we are in the minority, don't be scared and fight this BEAST with all you have...
Many thanks :(...

katenorwood
Posts: 1832
Joined: May 2012

Hello,
I'm new to the board, and no your meesage was NOT long. We are here to support and lift each other up. I also am dealing with a daughter who has HPV cancer of the cervix that has invaded the uterus. I don't understand any of this....she will have a total hysterectomy at age 30 soon. Then I don't know what else. I am so terribly sorry for the news on your husband. but remember with faith anything is possible. All my thoughts and prayers are sent to your husband, yourself and your children. warmest regards, Katie

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Unfortunately there are no guarantees, just like the old "everyone is different".

I'm sure that everyone here has it back in their mind with every ache and pain that doesn't go away in a few days..."Is it back"...

Just don't give up hope, thought or prayer that he could be one of the "some people do better"...

Thoughts and Prayers,
John

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Please post as often as you need. The first round of radiation did not cure my cancer. Neither did the surgery. I just finished a second round of chemo and radiation. The cancer is beaten back, but is it gone? I hope your husband can hang on. Rick.

nick770's picture
nick770
Posts: 195
Joined: May 2012

So sorry to. Hear about your husbands battle. I had stage iv tonsil hpv+. You post make me want to fifght harder.
So just to clarify if he doesn't get any treatment he has 7 months to live and with treatment he will have a year?

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Lynda, praying for you both. Stay strong and don't give up. Keep on fighting.
PM me if I can help you in any way....to chat, etc. just let me know.

NoDuck
Posts: 134
Joined: May 2012

For strength, for love, for peace.

Deb -- caregiver to Dale, Stage III tonsil cancer

Jan Trinks's picture
Jan Trinks
Posts: 467
Joined: Apr 2009

Hi Karegiver:

First of all, please don't worry about how long your message may be. I did that and was told by all the wonderful people here (that I call my "CSN buds") that's what this is here for and they are here for. My husband was diagnosed in Nov. 2008 and did real well thru chemo and radiation all things considered and for the next year after that and then it came back with avengence! He passed away in Aug. 2010. Treasure every moment you have and will be praying the clinical trial is successful. And you are so right, we are in the minority here and one cell sometimes breaks away. But I still consider Charlie was a survivor and he fought it with all he had and had a wonderful attitude. And as the NC State basketball coach, Jim Valvano, who passed away from this beast, said, "Never give up"! God Bless!

Jan (Basketcase)

joannaw81
Posts: 110
Joined: Sep 2011

2 days ago I read your post from April and I was wondering how your husband is doing. The reason why I read your post from April it's becasue I was trying to find info about lung mets. My mom went through 2 recurrances but they were all in the head and neck area. After last PET they found a nodule in the lung(it didn't light up)which is 0.5 cm. Doctors say not to worry that it doesn't look like cancer (right now I don't have the paper work and forgot how they decribed it) but I'm still worried. They say wait and watch. Her next PET is in September. It's hard to be positive when you have such a history as my mom. Anyway I just want to say that I am really sorry. Sometimes I wonder how would I handle news like that but I always remember that " God never gives you what you cannot handle". I will keep up in my prayers.

KareGiver
Posts: 290
Joined: Apr 2011

For your comments. Each one touched me and know that we appreciate your thoughts and prayers. Jan, I know from reading posts that you understand too well. Ingrid, I will be in touch. John, thanks for always being there. I want to say everyone's name that posted but I didn't write them all down and my memory stinks. HANG IN THERE! As I said, I do hope we are in the minority here so keep fighting.
Lynda

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

Hang in there. I've got two 0.4 cm nodules in my lung that have been hanging around for over two years now. My Stanford Doc says the same thing: "not to worry." It's likely they've always been there, as they are so small, they won't show up in every scan.

Deb

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Lynda ...will be praying for your husband and you....

I do believe it helps in the area of strength and fortitude but also in getting well...no matter...prayers will be coming ..do keep us posted

Tim

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

I am so sorry to hear you guys are still battling the beast. I beleive in miracles and the power of prayer. I will be praying for your family. Fingers crossed for a good outcome. Take care my friend and stay positive..Message me if you need to vent.

KareGiver
Posts: 290
Joined: Apr 2011

Thank you for your prayers...I guess the "highly curable" description for this cancer wasn't meant to be for my husband. He is fighting it, though. So much to live for.
I hope your husband is doing better. He really has gone through struggles with the treatment but I have faith that they got it all. Take care and thanks again.

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

I am so sorry to hear of your husband's lung mets. We are dealing with a recurrence also but our Oncologist did not suggest clinical trials. Buzz is getting Erbutux and Carboplatin as palliative treatment. I hope your husband has a good response to the chemo.
Take care of yourself too. Karen

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

My husband had a metastasis, as well, and we have done one clinical trial. He responded very well for four months and then the cancer started to progress again. I'm curious...would you share the trial you are in? We are searching for another one.

Robinleigh

KareGiver
Posts: 290
Joined: Apr 2011

I will pm you with our info...

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

We seem to be prepared to do trials if standard chemo doesn't show results and Andy's ecog score and blood work is okay. The lance Armstrong foundation is very helpful and the national cancer institute. It's amazing how many trials ate out there!

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

My hubby dx Dec 2008 Mets to lungs March 2010 , they gave him 1 year with out treatment 2 with, He had done serveral chemos, now on a clinical trial. We will know if it is working July 11, it will be three months since his last Chemo, and when he started the pill.

KareGiver
Posts: 290
Joined: Apr 2011

For your info about trials. My husband has his first scan on 7/2 (and third chemo on 7/3) so we will have some idea if there has been any shrinkage of the tumors. I am so very nervous. Thinking of everyone!

hwt's picture
hwt
Posts: 1944
Joined: Jun 2012

Prayers to you and yours. My cousin had metastasized melanoma and was told to get his affairs in order. He found a clinical trial and has now been cancer free 7 years! Never give up trying.

KareGiver
Posts: 290
Joined: Apr 2011

Thank you so much for your post and so happy for your cousin! I need a kick in the a** to not give up on things...this is an inspiration for many!

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

Andy's mets have begun to shrink. No, his cancer is no longer considered curable, but it is treatable. I'm beginning to think that there is immeasurable power in the will to live. Try various treatments...search for trials...NO giving up!!!

Talkstoomuch
Posts: 2
Joined: Jul 2012

After receiving radiation and chemo for BOT SCC in 2010,I am in remission.However the Dr told me of a "spot " on my lung in March of 2011 and probably nothing.Well in November of 2011 it had grown slightly and was "worrisome for recurrent oral cancer".Went to ENT who thinks everything is cancer,but said he saw nothing to be concerned over.Then had another cat scan in Feb of 2012 and the "spot" had increased in size more.So February 23rd they went in and removed it in a wedge resection,using robotic arms and scopes.VATS,for video assisted thoracic surgery.They said tissue surrounding nodule was clear as well as lymph nodes and I would be fine,no further treatment.Although both cancers were SCC,they think this was new as opposed to have spread since it was a singular nodule and contained.If it had spread,they feel there would be more than one and not contained.So Im feeling fine now,keeping fingers crossed,and pet scans every 6 months.Just had my first since surgery and all was clear.

KareGiver
Posts: 290
Joined: Apr 2011

How fortunate it was one spot and they were able to remove it surgically. My husband's involves lymph nodes and multiple spots. However, he is responding to treatment! Keep fighting and take care!

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Saw this post had become active with some comments ..and I just wanted you to know you are STILL on my daily prayer list (fyi....also started a prayer task team for those who asked to be on it with a specific request..if you want to be on that look for the discussion "Want to be on a prayer list?") ever since the beginning of your post at the very top!! I too believe in the power of prayer ....many others on this thread are in there too :)

Thinking about you and your husband and we care!!

Best,

Tim

Talkstoomuch
Posts: 2
Joined: Jul 2012

KareGiver,I know I am fortunate,and I will pray for you're husband to keep getting better.There is no giving up,though at times it seems easier.God Bless you and he and all who are battling this beast.I never use the term "beat",for it is a formidable opponent.But rather winning and keeping it at bay.

KareGiver
Posts: 290
Joined: Apr 2011

I was surprised to see this brought back to the top...and appreciate soooo much your comments, thoughts and prayers. It is unlikely we will meet our friends in person, but it means the world to us knowing you are there. Take care, and THANKS AGAIN!

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

I too am sorry to hear this news but never give-up on Hope and the power of prayer. On my 3rd Cancer I was only giving a 5% chance with treatment that I would make it a year, I am still here 6 years later. I live with a lot of side effects and some of them are just now starting to show-up, some are not too bad while others are a real killer problems. The most importance this is that I am still here and enjoying being with my grandchildren.

Keeping you both in prayer
Hondo

KareGiver
Posts: 290
Joined: Apr 2011

You are an inspiration to so many of us. So good to hear from you. Take care!

nick770's picture
nick770
Posts: 195
Joined: May 2012

How are things coming along

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Since my first reply, I've had PET results that are "highly suggestive" that I'm on the same road as your husband. I reread your post and it was very helpful. I think I'm like the majority of the patients here in that I want to hear both the good and the bad news. We actually need to hear both sides of the story in order to make the best choices in our individual cases. Thank you for posting. Rick.

KareGiver
Posts: 290
Joined: Apr 2011

First of all, our wish is that everyone on this board has positive = GOOD results. Is it just me, but does it seem there has been not so positive news lately? Like anything, I am probably focusing on it. I have avoided posting our other side of the story. Rick, because of your post, I will "briefly" do so.

My husband, Randy, diagnosed with mets in late April, has been in a study since early May. He was randomized to "Arm A - which did not include the study drug (bevacizumab). He has had 6 cycles of chemo of docetael and cisplatin.

This past Monday (10/1), he had the ct scans and blood work to determine if he could take treatment #7 the next day. The answer was "no". His scans were stable but his bloodwork was poor - don't have the whole story but I think he is severly anemic. Doctor took him off the study (knew it could happen, but didn't really expect it this soon). Randy did have an extra week between treatments this time because of our planned vacation - something we were told to "never postpone for treatment." Hmmm. Our next appointment is the first week of December.

How do "we" feel? Well, it is a nice to not have chemo. It is kinda scary that we don't have an appointment until December "unless something comes up." This apparently is not uncommon to be taken off the study at this point, but still...

Please, please think positive and hope for the best. Fight this damned beast with all you have. Let's say it together - "EVERYONE IS DIFFERENT."

Rick, I think I really needed to post this but wanted to remain positive - especially after losing Andy, Glenna and others. Thank you for giving me the permission.

PLEASE don't give up!!!

Thanks and hugs to all - Lynda

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

I'm so glad you posted. You and Randy remain in my thouhts and prayers.....

You are truly an ispiration and I admire your strength...even if you may not feel strong at times, you are in my eyes...and Randy too.

Best,

Tim

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