In late June, John was experiencing chest pains and his GP sent him for a chest x-ray. That was followed by a phone call from the GP that he was sending the x-ray onto our RO as he felt the results warranted further investigation. John had a CAT scan at the end of July and today we were given the results -- the cancer has metastasized and is now showing up in the lungs. The RO believes that the cancer has spread to the rest of the body -- it is only more easy to see when it is in the lungs. We are now waiting for an appointment with the MO, but the RO made it very plain -- any medical treatment is to maintain the quality of life for as long as they can, and not the quantity of life.
I was hoping that I would never have to write this post but I guess the choice was never mine.
Gloria, Im very sorry to read your update. Wishing you both all the very best with everything you are facing.
Gloria,
I am so sorry to hear about the recurrence and outlook. Keep seeking other opinions as you know there are always different perspectives and options.
Best to you, don
Gloria, I am very saddened to read your post. Terrible news. Not what we ever want to hear and I can imagine how devastated you both are feeling.
Get another opinion, chase options. One day at a time.
Keeping you both in my thoughts and prayers,
Tammy
Crap....I am so sorry. Please know you will be in our prayers. As you know, this is everyone's worst nightmare. I cannot even imagine what you are going through, but we are here for you from afar.
Kathy
I am so sorry, I say that totally heartfelt with tears in my eyes and a lump in my throat. Its a nightmare most of us probably share and I am so sorry it is your reality.
Damn! Sorry to hear this.
Positive thoughts and prayers.
"T"
Gloria (and John),
I am so very sorry to hear this and can understand the fear, sadness and disappointment that you must have. I will double my prayers for you that hope and treatment will give you options and faith to get through this journey.
Please keep us updated as I fear the same with me as my recent CT has indicated a very small spot on my lung that is being watched (too small to biopsy at this time.)
All my best,
Nancy
I'm sorry to hear. As mentioned, seek out the best possible treatment. I heard of resection using VAT's for metasteses, and targeted therapies. Take care.
I would get another opinion by the most qualified oral cancer center in the world before I would accept this one opinion.
Thank you all for your kind thoughts and prayers. It is indeed a very difficult time for us.
PaulB, the RO has already ruled out surgery; his comparison being, "when your house is on fire, just dousing the bedroom won't help." The MO is in charge of drug development and it is possible that she might suggest clinical trials.
Nancy14, your case (I read about it on the other thread but could not comment as I was still waiting for the results of John's CT scan) may be quite different. Please take it a day at a time and try not to get ahead of yourself.
Hi Gloria. Just finding your post this morning. I'm just so sorry to read the current update with John. As a caregiver it is our worst fear and just leaves us with such a helpless feeling. I 2nd the suggestion of seeking a 2nd opinion and clinical trials. Continued prayers to both you and John as you travel this road together. Hugs, Wanda
I agree. I know you are in TO and I do believe you are being seen at PMH - I would ask two things... 1 for a biopsy of the lungs... I would want to know how many nodules or tumors they are talking about, then I would want to know the results of the biopsy (is it mets for sure) a friend of mine who's husband was treated for the same cancer, had something appear in his lungs, they went in and biopsied and discovered it was not mets but early stage lung cancer, they removed it and treated him and he is still walking the earth free and clear today... You want to know for sure. Hugs. And have faith.
Cheryl,
That is brilliant, get a biopsy of a lung nodule to determine etiology of what is showing on the CT of the lung. It seems there is a big fork in the road ahead depending if it is metastasized or it is new.
Gloria,
How did they determine it is metastasis and not a new cancer? It seems they only went off the recent CT scan.
Praying and hoping for you, Don
So sorry to hear that you have joined the same boat as us Gloria.
Just to share some of my advise that I have acquired over the past month or so which I hope may be of some assistance.
a. The doctors will never be sure as to whether or not the cancer in the lungs is metastatic cancer or a new primary as SCC looks exactly the same no matter what part of the body it is actually from. However, as the duration from the cancer appearing from the lung to when treatment was completed is relatively short - there is a very high chance that it is indeed metastatic and should be treated that way.
b. It is important that SYMPTOMS caused by the cancer in the lungs (i.e. shortness of breath, back pain etc.) is taken care of asap. From what I have researched, chemotherapy will be the only course of treatment offered and will be used for palliative purposes. Tomotherapy and/or IMRT may also be used to reduce the tumour size in the lung but should only be done if symptoms are severe and/or may cause further issues later down the track.
c. Unfortunately, curative chemotherapy is not possible when a H&N cancer moves into the lungs and has shown high levels of toxicity & very minimal impact. There are certain clinical trials that your MO may be able to introduce you to and one that I recommend is treatment using Reovirus. More info on current trials can be found @
http://www.oncolyticsbiotech.com/clinical-trialsd. Mind over matter is something that ALL the doctors have told us during this last round for me and Jen. Keeping a strong, healthy mind coupled with spending time with loved ones is the single most important thing you can do when stuck in situations like the one we are currently in.
As someone who is only a few weeks ahead of you in this journey, I understand the confusion, anger and "what now" that must be consuming you and I hope some of the points I have outlined above gives you some answers.
Best of luck and my prayers are with you both.
I called up the RO and talked to him for about thirty minutes yesterday. They see 4 to 5 (the RO was speaking from memory and did not have the actual report in front of him) nodules in the right side of the lungs. They are about 5 mm in size and have the classic, seed-like appearance. These are the large ones that have shown up on the CT scan. They are growing and they were not there the last time John had a lung CT scan right before his chemoradiation treatment in November.
The RO believes that John's inability to swallow is likely related to the TX he has had, but now with cancer in the body, it is possible that the gastroenterologist will not want to aggressively treat it.
Like Jay Jeong said in "C" in his post above, the RO said that most doctors will not treat the cancer in the lungs aggressively as the high toxicity will greatly impact the patient's quality of life but without the patient getting any better.
We now have an appointment to see the MO in two weeks' time. We will see what she has to say and whether a biopsy can be scheduled. In the meantime, we will be talking to John's GP about counselling.
Jay, I particularly want to thank you for your post, knowing that you have your own problems to deal with right now. Like I have said before, I came onto the forum just around the time Jen was finishing her treatment. I had always taken comfort in the thought that she was able to beat the tongue cancer and in your positive attitude. It saddens me to find that we are now facing the same problems, again, just a few weeks apart.
I'm concerned about a) I could be wrong, but i am under the impression that a biopsy will definitively tell you if it is small cell lung cancer, non small cell lung cancer, or squamous cell carcinoma. They are three different types of cancers. The may not be ale to tell you where the squamous cell came from, but in that case it would likely be mets.
I'm only saying this because they are all treated different ways. Or in the SCC case not really treated.
I would still push for a biopsy. I think or maybe doesn't wash for me. There is risk though with a biopsy as well though. Hugs. I wish I had answers -
We saw the MO yesterday and went over most of the issues that have been brought up in the previous posts.
John is not a candidate for any clinical trials because of his closed esophagus. Most medications in clinical trials are in pill form and doctors are forbidden from crushing them to put them in the PEG tube since no one can predict what may happen as a result -- e.g. will the medication stick to the plastic tube, will it lose its efficacy, will its efficacy become way too strong etc, etc.
A biopsy is potentially dangerous at this stage. Since the behaviour of the cancerous cells which have "escaped" from the head and neck area is well-documented, the doctors do not feel that they want to take the risk of doing a biopsy. In addition, if a nodule is formed away from the head and neck area after a lapse of time post-treatment, it may indicate a possible new primary; however, when the nodules are found this close to the end of treatment, it is likely to be metastasis.
The deep vein thrombosis that John developed after his second session of cisplatin (an ultrasound at the end of July indicates that he still has blood clots in his legs)can also constitute problems for further chemotherapy at this juncture. The last time, there were times when his blood counts were so low that he could only be given half the dose of Heparin. Since any systemic treatment at this time is likely to Cisplatin or Carboplatin, we can expect a repeat of all of the problems.
I understand that no one wants to told that there is little that the doctors can do now. However, at some point, one has to seriously consider the quality of life issues and one has to trust the judgement of our doctors.
I agree, sadly - did they not mention erbitux at all? Regardless best of luck and much love to you both
Gloria - Words do not convey how sorry I am for you and John; know that you are in many, many prayers.
Best,
Nancy
No, Erbitux was not mentioned.
Gloria, the 2 of you have been in our prayers. I can't imagine where you are mentally with all this. I would be climbing the walls crazy angry. Please keep in touch with us. We are here for you, if only in spirit and words.
Love,
Kathy
Dear Nancy14, Kathy and others who have posted, thank you for your prayers. Please know that you too are in my thoughts and I wish you all the very best.
I was driving home from the supermarket the other day feeling sad that another day had passed and that meant another day less for me to spend with John. Then, as I turned into our street, I suddenly came to the realization that even if John was not at all sick and that the cancer had not hit us hard, with every passing day, it would still mean one day less to spend with John. Today should not be any different from any other day in our lives. I went home and told John and we are both resolved that we will carry on with life as we have always done -- with no regrets.
Hugs and much love to you.
Wishing both of you all the best.
Gloria, you have great wisdom to be able to see thru all of this and to resolve to live life to its fullest. Best wishes to you both!
Gloria, I have been struggling to find the words to say, but I am still at a loss - I am so very sorry to hear your news, and you and John are in my thoughts.
Love your strength. Enjoy every moment.
Gloria-
I am so sorry to read your news. You are in my thoughts, as well as the thoughts of so many others. Your strength and philosophical approach are truly amazing and inspiring.
Best,
Mary
Gloria - I think of you and John often and wonder how you are doing? Hopefully John (and his doctors) are doing well managing any symptoms and/or pain, and that you both are finding strength and happiness one day at a time. Knowing you are North of me, you must be settling into Fall with leaves off trees and that cool (cold) air starting to move in - brrrrrr... I am not a winter person at all.
My best to you both, with prayers.
Nancy
Hi Nancy,
I am so touched by your concern and kindness. John is going in for a CT scan of his abdomen, thorax and head and neck. These scans will tell us if the cancer has progressed and at what rate. We are scheduled to see the MO the week after for the results. John is not yet showing symptoms except for the fact that he can't walk for as long and as far as he used to. He did end up in ER one Sunday when he had a splitting headache (he never used to get headaches). The doctors there did a brain scan but nothing showed up. Then a week or so later, John had an attack of the hiccups which lasted for more than 24 hours. We were able to get in to see his GP who prescribed muscle relaxants and that solved the problem. When these things happen, I get scared because no one knows if it is cancer-related or not. Other than these episodes, we are truly taking it one day at a time and one problem at a time. We are lucky to have a very supportive GP and a competent home care nurse who visits once a week. Yesterday the case manager visited and set us up for palliative care. I particularly wanted that to be in place as I don't know when the pain will start and would like to know that help is there if I need it.
I come on the forum everyday because there are some members, like you and Jay Jeong, that I feel a connection to and would like to know how they are getting on. But being in the situation that I am, it is hard for me to participate in the discussions or to offer anyone any advice. I will, however, update when I can.
Thank you, Nancy, once again for being such a kind friend.
I'm glad you are getting things sorted out. There is always hope in my eyes. An australian man who was told he was terminal went home to live out the rest of his life with his wife. They said there was nothing more they could do for him. This was three or four years ago. His last check up he was NED. I am not sure how it came about but I do believe certain lifestyle changes, can support your health and immune system and prolong quality of life. I do hope for this for you and your husband. hugs and stay strong.
We pray for you and John every night Gloria. And not a day goes by that I don't wonder how things are with you, so please post now and then because your cheering section wants to hear from you!!
Blessings,
Kathy
Dear Cheryl and Kathy, thank you for your support.
This morning we got the results of John's CT scans from last week. The head and neck area remains clear and there is no sign of tumour in his other organs. The lesions in the lungs, however, have grown to 1 cm and 1.5 cm. The doctors' conclusion is that the tumour is slow-growing. John is going back for another series of scans in two months' time. At that point, it is possible that there might be a clinical trial that he can participate in which is delivered by IV and so his inability to swallow will not be an issue. I guess we'll just keep soldiering on.
Gloria,
Thank you for taking the time to post John's update. That is good news of no other lesions and that the existing 2 are slow-growing and hopes of clinical trial in the future. It must be so exhausting (emotionally)for you both; I hope you are taking time for yourself and each other. Are you/he both working or keeping busy? Maybe a Fall trip to see some foliage?
I will keep you in my prayers.
Best,
Nancy
Keeping in
I'm so glad they have an option... If there are only 2 can they not surgically remove them?
We asked, surgery is out of the question because the lesions will multiply eventually since the cancer cells have got into the bloodstream. The reality too is that there are four or five lesions according to the first scan but it is likely that only two are of a significant size for now.
Thank you for the update Gloria. Sounds like a bit of a reprieve.
At least there is not an immediate decision that has to be made. Try to love on each other a little!
You remain in my thoughts and prayers.
Kathy
Gloria, I am so sorry that there isn't better news. I'm hoping John can do the trial, and I'm thinking of you both.
Very much hoping the can do the trial... and most importantly that it is effective. hugs to you all.
Tina, Kathy and Cheryl,
Thanks for your support. It means so much to know that you care. I am now looking into what questions I will need to ask the doctor when the clinical trial comes up, as well as issues that we may need to seriously consider before committing. At the end of the day, it has to be something that John wants and not something he gets pushed into.
Absolutely. Ask if there are any specifics about the trial you need to know. As in if the trial doesn't work, is there a wait time to try another treatment (assuming one is available) My friend unfortunately had this come up when she was battling peritoneal cancer. Her trial chemo was combined with taxol. There was another chemo available to her after the taxol and trial chemo (though her chances at this point were slim) but because they had to wait until the trial was out of her system, and that was a three week wait followed by an uneccesary 2 weeks because she changed hospitals, and they put her off because the dr. was away on vacation and the unit was on slow down. That made it 5 weeks, and by that time she was so sick and had lost so much weight that they refused to treat her and moved her into palliative.
hugs and best of luck.