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#194608 - 06/08/17 10:58 PM Need Hope after today  
Joined: Nov 2016
Posts: 59
MrsW Offline
Supporting Member (50+ posts)
MrsW  Offline
Supporting Member (50+ posts)

Joined: Nov 2016
Posts: 59
we went into the PET scan with optimism...
we left today with " a hot spot" on what appears the muscle where the tumor was by his jaw
and two spots on his lungs that weren't there before.

his first PET scan had some concern for nodes under his R arm but those aren't there

how in the world do things show up in the lungs at 4 months out from chemo and rads...

plan is for a biopsy with the onc ENT and review with thoracic surgeons and wait for radiology read from the PET...
possible biopsy or excision

in shock..... tears. so damn #$%^&* disappointed, devastated .....

guidance on a direction?/ we are at a CCC... Dartmouth.
thank you

Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
#194609 - 06/09/17 01:37 PM Re: Need Hope after today [Re: MrsW]  
Joined: Jun 2007
Posts: 10,035
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,035
MrsW, I am so very sorry the results werent good news!!!

Spots in the lungs may or may not be anything serious. A "spot" can be there for years without changing. Ive had a "spot" on my lung for the past 9 years that has not changed at all. Small spots can easily go undetected on scans. Many times with OC patients, a spot is from pneumonia (usually aspiration pneumonia).

On the bright side, this has not been proven to be cancer yet and there are new drugs that have shown to be effective in cases like your husbands. Opdivo (nivolumab) from Bristol-Meyers and Merck's Keytruda (pembrolizumab) have fast tracked thru the trials to be available years earlier. Heres a post from Brian from 10/15 about these newer medicines..... "There is a brand new drug from Bristol Myers Squibb called Opdivo (nivolumab). I would ask your doctors about this. I watched this go through clinical trials and it was later fast tracked by the FDA for lung cancers in patients that had had previous platinum based chemo. It was targeted for non small cell lung cancers. You don't comment about your specific diagnosis, but even if yours was lightly different, this is a drug that works with your own immune system and it might open up a pathway in other lung cancers for an immune response. It had some pretty good results though it didn't work for everyone. If your cancer is a variant of this, you may still get someone to try it off label. That might be a hail Mary idea, but I've always said I'm not going to go quietly into the night. It think it is at least worth talking to your doctors about sooner rather than later." This is past all the trials and is now readily available with many patients who have found great success with these drugs. Talk to your husbands doctors about the possibility of these newer immunotherapy drugs.

As far as the "hot spot" by where the his tumor was.... this could be scar tissue. As you know only a biopsy can determine exactly what is going on. Ive had many false positives that turned out to be nothing more than scar tissue. I know many others who have had this happen as well.

I know exactly what you both are going thru. Ive been there and seen countless others in the same situation where it turned out to be nothing serious. Of course, this could be cancer but until the biopsy proves it really is cancer then right now at this time you do not know for certain your husband has cancer. Our saying around here is .... its NOT cancer until the biopsy proves it is. PLEASE do your very best to focus on the facts avoiding the "what if" thinking like the plague. I know it must be next to impossible to not go there but for your own sake, please do your very best to continue to go about your regular routine as much as possible. Just think of all the time spent worrying and being upset. All the time has been stolen from you. Cancer is a thief that steal away your time. It paralyzes us into being immobile where we cant focus on anything besides "what if". By only allowing ourselves to go there for a limited amount of time we have better control over our emotions and thinking. I promise if you can do what Im suggesting you will feel better about whats going on and be able to step back to see nothing has been confirmed as of today. If (and that is a HUGE if!!!!) it would be cancer, it was caught very early where there are options for treatment as I mentioned above.

Hang in there!!!!!


PS... Im sending you a PM.

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#194610 - 06/09/17 01:45 PM Re: Need Hope after today [Re: MrsW]  
Joined: Oct 2012
Posts: 971
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 971
Toronto, Canada
Mrs. W,

I am so sorry about the bad news.

We were in a similar situation. My husband was six months out of treatment when he constantly experienced pain in the right shoulder blade area. He put it down to bad posture and lack of exercise. It turned out to be metastasis to the lungs. In his case there was no need for a biopsy as the lesions had "the classic, seedlike appearance" of cancer. So, i do know how you must be feeling -- i felt like someone pulled the rug right from beneath my feet and I fell into a bottomless pit. My husband was extremely angry with the RO whom he blamed for having "messed up his throat" (he could no longer swallow because of scarring) and he absolutely refused to accept the diagnosis. In the face of all that, I felt I had to remain strong for him.

John was offered the opportunity of a clinical trial, needless to say we took it eagerly and with gratitude. Depending on what the radiologist is going to tell you, clinical trials are something which I suggest to keep in mind, albeit on the back burner.

I found it helpful for me to go back to my therapist who I had not seen for ten years. My husband also went to a therapist, though a different one. Some people found it weird, but I also painted the entire house at this point. I thought my husband would feel more cheerful if I could make the home environment as tidy as possible. It also gave me something to focus on. We continued to socialize and visited our friends. We kept our life as normal as we could. Through it all, I got some really solid support from John's GP and our pharmacist.

There is still a chance that you will receive some encouraging news and I fervently hope that is the case.

She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#194617 - 06/10/17 01:21 AM Re: Need Hope after today [Re: gmcraft]  
Joined: Nov 2016
Posts: 59
MrsW Offline
Supporting Member (50+ posts)
MrsW  Offline
Supporting Member (50+ posts)

Joined: Nov 2016
Posts: 59
thank you always for sharing your experiences, what you and your dear husband endured and what you learned from all that .. and giving back to us in need now.! thank you!

it helps to read about your resolve to continue to lead as normal a life as possible.
While we are still in a shock... the let down of the hopeful belief we would hear good news...
hopefully, we will find strength to face this and keep going as best as possible.

many tears today... but we both went to work. I, too, fervently want to belief and hold onto hope that this will all be good news in the end.

I am not sure my husband would seek out a psychotherapist, but .. I will watch and encourage if needed.. for both of us.

we were planning on selling our home.. seems a bit of a not good time to think of that right now.

Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!

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