Here we are again! Feb 2016 Charles had a recurrence in the base of his tongue. Surgeon resected his tongue, removed two involved lymph nodes, and increased the size of his stoma. A PET scan showed two suspicious spots on his upper left lung lobe for metastatic cancer. His ENT has referred him for radiation for the spots on his lung. Do you think this is the best treatment for him?

This was his third recurrence since 2012. We are understandably tired.

Thank you!

Sheryl

Will the RO do a biopsy?

Sheryl, Im so sorry to read about another recurrence! Im sure this is more than enough for both you and your husband. I would suggest you seek out a second opinion at one of the top Comprehensive Cancer Centers (CCCs). With your husbands cancer coming back so many times a fresh set of experienced eyes would be a good idea.

Without a biopsy, the spot can not be identified as cancerous. Sometimes OC patients will have different "spots" show up in their lungs after going thru rads. Not always does this mean they are cancerous. Its happened to me as well. Having false positives on scans after rads is unfortunately quite common. Only a biopsy will determine what the spots are.

Best wishes with everything!


List of CCCs



PS... As a caregiver, take some time for yourself too. Being a caregiver is a difficult job, especially with everything both you and your husband have been thru. Be kind to yourself.

Thank you, Christine. Charles has had all his care at one of the listed CCC. He has an excellent surgeon with an excellent team. His surgeon has worked with an RO located in our town, so we have been referred. Our first appointment is Friday Mar 4. Charles has refused a second round of rads to his head/neck. But is open to treating possible mets to lungs with rads.

Sheryl

Sheryl, do you know how many grays of radiation Charles has had so far? My husband had three rounds of radiation in all -- 70 grays, 20 grays and 20 grays -- 70 grays for the initial treatment, the two courses of 20 grays targeted the swollen nodes in his airway. After the initial treatment, each time the RO would say John was using up one of the five "bullets" he had got left. We were advised to consider carefully because it would mean that in an emergency situation, the RO would not be able to treat him with radiation.
For his lung mets, John was treated with chemo. He was in two clinical trials, one course of taxol and carboplatin and two weeks of capcitabine.
John was not given a lung biopsy when they found the lesions because on the CT scan it was very clear that the lesions had the classic appearance of cancer.
I would suggest that you ask the RO how many grays Charles will be getting and also maybe explore the possibility of chemo with your doctor at the CCC.
It is a tough road ahead, so like Christine said, do take care of yourself and your needs.
BTW, for one of his clinical trials, John had to have a lung biopsy. Like the doctor said, it's like poking a hole in a balloon and trying to not let the air out. There is some risk in a lung biopsy -- e.g. the lung could collapse. These are things you might want to take up with your doctors.

Gloria, I am not sure how many grays he has received. It was in 2001. The RO has all of his records. Charles had a chest ct scan on Jan 20 that showed interval development of several nodules in his upper left lobe. So he took a round of antibiotics and had another low dose ct scan on Feb 3. Usually I can read the scan results but the Dr who wrote the results for the second scan did not appear to be comparing the scan to the first, or any other, scan. But his surgeon is convinced that the lung nodules are mets. I didn't know that mets to lungs could be dx from scans. I was deeply saddened to hear your John passed away.

Sheryl

Sheryl, the reason I asked was that I was given to understand that 70 grays is the lifetime maximum for that particular area. With the two later, shorter radiation treatments, each time the RO made a point of saying that he would try and spare the spine in addition to his five bullets analogy. So, knowing how many grays Charles has had is important.

When John's mets were diagnosed, the CT report said that the lesions had the "classic, seed like appearance." That was how the RO knew it was cancer.

If a referral has been made, surely your surgeon has sent over Charles's medical history. Can you find out if that's the case? If not, it might be worth your while to get copies from his doctor from 2001.

I found that I needed to have all the facts clear so that I could tell the doctors what treatments John had had, when, where and how much. It sounds absurd but not all the doctors read all the paperwork even if it has been sent. Each time John ended up in the ER or was referred to yet another specialist, we got asked the same questions about his treatment history. At some point, after he started to lose his strength, John would lose the narrative and it was up to me to talk about things with the doctors.

Gloria, Charles is fortunate in that all his cancer care, beginning in 2001, was provided by the same team at the same facility. All of his records have been givin to his new RO here in our town. So, I will ask about the number of grays givin back in 2001.

This is the most concerning comment from his scan results.
"Interval development of multiple left upper lobe pulmonary nodules, the most suspicious being a peripheral 9 mm nodule with spiculated margins".

But, I need to pack all this up and try to enjoy each day. Next week we will meet with RO and he can help us unpack. Question is, can I really do that anymore? I sure hope so.

Thank you for being here. Thank you for listening.

Sheryl

Sheryl, packing it up is the best of dealing with it. I taught myself not to worry about CT scan results until I was actually sitting in the chair in the consultation room. It's not escaping from reality, it is not letting worries take over your life. Way to go!

We met with RO today. Turns out Charles does not need rads at this time, his surgeon just wanted us to be under the watchful eye of his friend! So RO coordinated an appointment with MO for next week to discuss options and put together a plan. Since lung nodules are currently growing very, very slowly RO thinks we could CT scan in two months but MO will need to weigh in on that decision. Charles would like to avoid a biopsy.

I'm not sure why but I feel really relieved and at peace!

Sheryl

Sheryl, it's a good idea to get to see an RO as well as the MO. There are situations where radiation is more effective and others where chemo is. This way, you will get the care of both doctors. This is one of the reasons why it is always better to be treated at a CCC. Keeping my fingers crossed for you and Charles.

Gloria, Thank you! The RO and the MO are both in our local CCC. We will be seeing the RO every two months. Our first consult with MO is next week to prepare a plan should the lung nodules increase in size between scans. Charles had a ct scan 1/21 and a PET ct scan 2/3. In between the scans he took an antibiotic. There appears to be an extremely tiny increase in the size of one nodule between these scans. I will be pushing for another scan to be done around May 3. Charles is hoping to avoid a biopsy. I'm looking forward to sitting down with the MO next week. Sheryl

Just checking in. MO agreed to scans in early May. She is encouraged by the results of some targeted treatments that the FDA will probably be approving later this year. Charles is holding his weight. Has very good days and very difficult days. We are just taking one day at a time. Hoping and praying for improving health for everyone here. ❤️

Sheryl

Sheryl, thanks for updating. It is a roller coaster ride sometimes. If you need someone to listen, please feel free to pm me.

I just wanted to write in here that I am so grateful for this forum and for people like Gloria who are still here helping and giving advice and care. Also to Sheryl, many thanks for keeping everyone up to date on your husbands health. I learned of my mets to my lungs back around October and have been on Erbitux weekly ever since. Tomorrow I have another CT scan to see how the tumors are doing. Mine were growing quickly at first and then on Erbitux so far they have pretty much slowed to a crawl. It is great that Charles has slow growing tumors. It is very encouraging to keep hearing about different immunotherapy and targeted therapies that are being approved. I have heard so many good things about Opdivo which is the next treatment I will get when Erbitux stops working. I know there are others that will be out soon also. I am hoping, just like everyone, that these will be able to extend life for a while and just maybe long enough to see one of them or more actually put this cancer into long term remission. I am praying for everyone and hoping for the best. Thank you to everyone on this board as it is a life saver to have an anchor to hold onto when needed.

Thank you, Jeff. I love the people on this board. I don't know what I would do without them. Most of the time I have tears in my eyes as I read all the posts. Please know you are very often in my thoughts and in my prayers too.

Small but HUGH update. Charles ate solid food, soft scrambled eggs, yesterday. That was his first solid food since 2/8/16. He said scrambled eggs never tasted so food!

Praying for great news tomorrow!

Love to you my friend,
Sheryl

Charles ate solid food, soft scrambled eggs, yesterday. That was his first solid food since 2/8/16. He said scrambled eggs never tasted so food!

Excellent news! That is a huge step forward. Both being able to swallow and having taste buds to enjoy it.

Thank you, Don. Charles tells me that he really only tastes sweet foods. All other tastes are from memory but he enjoys them anyway! He is still maintaining his weight.

Next scan is May 2. I'm trying to stay calm. Some days (and nights) I succeed.

Charles is an artist. Lately he is happily working away in his studio almost every day. His oncologist has encouraged him to stay busy.

Cheers,
Sheryl

Charles had a ct scan this past Monday (5/2/16) darn, darn, darn. Spots on lungs grew. Only a mm but they freakin grew. And it appears there are new ones. Plus a couple slightly enlarged lymph nodes in chest. But the real winger is another tumor in his neck. So, we are off to CCC to deal with that first. I am sick to my stomach. He's actually doing better.

Lily,

I'm really sad to hear such news. He is a survivor - Look how many battles he has been in before. Keep up the hope - NO reason not to think he can get down and win another battle with the beast. don

Charles saw his ENT this past Monday. He confirmed Charles has about a 3 cm tumor in his neck area below his jawbone. He was hoping Charles could be a candidate for robotic surgery but ENTs partners believe the tumor is too close to his skin. So we are scheduled for surgery May 31.

My thought has always been if it's operable choose surgery.

My question is, could targeted radiation have a better outcome? Is it time for more rads and perhaps chemo?

Thank you,
Sheryl

Does anyone know the best CCC for head and neck robotic surgery? Thanks, Sheryl

Here is the USNews list of Best Hospitals...

USNews Top Hospitals List


The link below is the Comprehensive Cancer Center list (CCC)...

CCC list


Hope the above lists help you to find the best treatment center for your husband.

Best wishes!

Charles had surgery again. Four surgeries in 18 months. This one was really rough. He had a racquetball sized tumor in his left tongue base. His surgeon re-built his tongue using his left pectoral. Surgery was May 30. He still cannot move his tongue. Surgeon is recommending another round of rads. This means all liquid diet and not using his electrolarynx. I'm trying to talk to him about where do we go from here. His listens but doesn't respond. He can text me on his iPad. He still has no symptoms from the tiny stuff in his lungs. I'm just wondering what the next chapter in this story will be.

I am getting a couple of Christine's magic peanut butter chocolate milkshakes into him every day.

Love to all,
Sheryl

Sheryl, Im very sorry to read about Charles's latest surgery. Poor guy has been thru way more than any one person should have to endure.

Im glad to hear he is managing to take in a couple of those giant super caloric milk shakes. I loved them!!! Most patients have issues with their sense of chocolate returning, but for some odd reason I could taste the chocolate in the shakes and also I found yoo-hoo soothing on my sore throat.

This may have already been discussed with you (and I apologize if its a repeat) but just in case it hasnt... have you looked into the new immunotherapy drug, Optivo? This is something that is supposed to manage lung tumors. Please take a look at this thread, I hope it will be of some help to you...

Immunotherapy Trial/Drug

Best wishes!!!

Dear Sheryl, Four surgeries in 18 months is a lot. It's good that Charles is able to get the peanut butter smoothies down. The extra nutrition will help him cope with the treatment better.

Is he finding it hard to talk about his situation? Has he got access to a psychotherapist at the hospital? John saw a psychiatrist after he found out about the metastases. I think it gave him a chance to talk about things that he wasn't sure he wanted to talk to me about. I, too, saw a psychiatrist who was and still is a great help to me.

John never really felt anything from the mets to the lungs. For him it was the chemo, the swallowing problems and the silent aspiration that caused him all kinds of problems. My understanding was, if the airways became affected, then the patient would have difficulty breathing. That was the reason John's MO suggested the two later treatments of radiation -- to zap the swollen lymph nodes that had appeared in his airways.

Keeping you both in my thoughts.

So sorry Sheryl! Keep him after that high calorie stuff so he has the nutrition needed to keep recovering. Agree with Christine; I would be asking and further exploring the comments made earlier about the lung spots. Prayers and all my best!

For some reason Charles' ability to swallow has gone downhill. So next week he will have a PEG tube installed. His med Onc has had testing done on his tissues and is ready to begin targeted treatments, etc. He will have another scan on August 1. His surgeon is recommending rads to the head. But Charles is saying he's had enough surgery and treatments and feels like he's knocking on heavens door. Time will tell.

Sheryl

Charles lost his 15 year battle with head and neck cancer yesterday. http://www.grocefuneralhome.com/obituary?id=1677433

O, Sheryl, I'm so sorry to hear that. My condolences to you and your loved ones.

Sheryl, I am so very sorry to hear of Charles passing away. He certainly went thru so many very difficult years. Thru it all you stayed by his side continually searching for things to help make everything easier for him.

Thank you for sharing his obituary. Charles sounds like he lived a full life. He had many interests, including glass. My son also works with glass (when he has time) and makes all kinds of things. Down the road after everything settles down I'd love to hear about his glass work.

May Charles rest in peace free from pain and illness. In time I hope the happier times you shared can bring you comfort.

(((HUGS)))

Sheryl,

I am very sorry to hear about the death of your husband. He went through so much, he is now free of all the suffering he endured for so long. Thank you for sharing with us here. don

Oh Sheryl, I am so sorry to read this update. Never forget that you have been a wonderful Caregiver and advocate for Charles.
I'm sure you have a lifetime of wonderful memories. Take care.
Tammy

So sorry for your loss.

I'm sorry for your loss, Sheryl. My condolences to you and your family.

I'm very sorry to hear of your husband's passing. My condolences to you and your family.

Dear Sheryl, I am very sorry to hear of your loss. I know you have many beautiful memories of you and Charles. You were an amazing caregiver, always by his side. Sending hugs to you. Jo