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How Long Has This Been Goin' On'

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Remember that song by Ace?

A question I posed in my first thread post, I'm posing to the group.

Two part really. How long was it from the time you were first diagnosed until you began treatment? Also, from the time you got the mask and had the simulation done until the treatments started?

I had my visits with the radiation and chemo oncologists a week ago. They made the mask and ran the sim. I figured I'd hear something this week. I called yesterday and was told it probably would be a few weeks. A few weeks? I was under the impression from the way they were talking that I would be starting in less than two weeks which would mean having the schedule done this week and starting the week after. I was a little upset and unfortunately I let that show to the poor gal on the phone. 

Meanwhile, since I was diagnosed, the tumor has grown from 3.1cm per the CAT scan Nov 14th to 5+cm (but under 6) as of last week. I'm not in any real discomfort but I feel it there. The only real symptom (which is worsening) is a clogged ear and sinuses on the left side of my face. 

While I'm not looking forward to treatment, I'm chomping at the bit at the same time. I have this monster inside of me having a field day on my cells and body and I want it out! 

Later yesterday afternoon, I got a call from the head of Medical Oncology at the hospital who got wind of my frustration. While I wasn't thrilled by everything he had to say, he explained to me the process and was quite the diplomat. We spoke about scheduling and times and he's supposed to give me a call today with some news and information. It just seems things are moving so slow. I had a heart attack in 2007 and was under the knife for bypass surgery in 5 days. Now I have a "Jack" in my neck and it's been 2 months!

What was it like for you? Did it seem as if the sense of urgency was missing? How did you deal with the waiting? 

"The Waiting is the Hardest Part" Tom Petty

"T"

 

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Dx January 2nd, 2009
Tonsils Out January 5th
Port put in late January
PET scan late January
Bout with Diverticulitus late January
First Chemo February 6th
Chemo/Radiation Ended June 18th, 2009

My mask was actually made and fitted in January, but I didn't start rads until early May...pleanty of time for anxiety to build.

I had nine weeks (three seek cycles) of Cisplatin, Taxotere and 5FU before the concurrent weekly Carboplatin and daily rads. I also had the tonsils as the primary, but a tumor (lymhnode) secondary near the carotoid, they chose to leave the tumor to see what effect the chemo and rads would have on it leaving a less invasive dissection possibly.

For me that was a great call..., the tumor completely went away near the end of the nine week sessions, confimed with a CT before starting the seven week regime'...it never has shown again.

Yes, like you I wanted to get started, get this out of me... It was a little slow, but then for the next sixteen weeks, you are the star...the center of attraction nearly every day.

Best,
John

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

T,

t2n2bm0 stage IV A left SCC

10/11/12 - We heard the "you have metastic cancer" call

10/22/12 - 2nd opinion and he was our choice for treatment

11/02/12 - 10.5 hrs of 2 surgeries, left tonsil, neck dissection

11/27/12 - planning session, mask making

12/04/12 - trial run, and first treatment

01/14/13 - finished!!!

hope this helps! 

Just curious, are you from PA?  My husband is getting treated in Philly.

Good luck with your follow up calls today!

Kari

 

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

i see a big differnce in treatment facilities. i went to Indy for my diagnosis which is 2 hours away, i could have gone 7 min. away here in town. i watch several i know go thru the same process of diagnosis to start of treatment and take 6-8 weeks to start. from the start to look for problem to diagnosis was 10 days, from diagnosis to treatment start 19 days with an out patient surgery in that time to find the primary. had mask made and set up 4 days before treatment with two days being a weekend. 

search for problem start jan 7 told cancer on jan 17th  SCC

out patient surgery for search for primary jan. 26th

fitted for mask feb 1st 

treatment started feb 5th with chemo 24/7 5 days 3 cycles every three weeks (two chemo's) and start of radiation 

finished treatment march 28th

first scan post treatment may 15th

neck disection and found only scar tissue june 4th

 

waiting is the worse of worse and i felt the same. keep in mind it's about success with treatments along with how they help you with side effects during treatments. i can say this, the last is far better today. 

praying you get some peace from your updated schedule when you get it. 

 

john 

 

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Thanks for the timelines. Indeed it seems like a mixed bag but sooner rather than later concerning the start of treatment.

I can kind of understand the lessened sense of urgency as I've probably had this growing in me for close to a year. I didn't notice anything until August of 2012 when I got a sinus infection/cold. The ENT said I've probably had it much longer and didn't realize it. But it is alarming the progress it's made in just two months.

I'm going tomorrow to Johns Hopkins for a 2nd opinion. I'll be meeting with an entire "team" of specialists from surgical, medical and radiation oncology as well as a speech language pathologist and nutrition expert. Where I'll be getting treatment, there has not been that kind of coordinated effort which is disconcerting. Unfortunately I can't travel the 2+ hours every day for treatment. I'm in VA (answers your question Kari, although I'm originally a S. Jersey boy *exit 4*) and just 25 minutes from Winchester where I'll be getting treatment. The Head and Neck Center Coordinator at Johns Hopkins agrees that it's not practical for me to have treatments there as the facility in Winchester does have the latest in IMRT equipment. My medical/chemo oncologist and ENT said I'd probably get surgery if it's needed at Johns Hopkins as they have the latest robotic surgery techniques going and I'm all for less morbidity! I'm hoping I won't need to go under the knife.

I'm off to a chemo class today in Winchester and I'll pose that question there and see what kind of answer I get.

"T"

 

 
MarineE5
Posts: 760
Joined: Dec 2005

Hello Fishmanpa,

Base of Tongue cancer here. Surgery early Oct, 2004, fitted for the Mask at the end of Oct. I was told that Radiation would not start until at least 6 weeks after my Surgery and Neck Disection, time for my neck and throat to heal.

I got antsy at the 6 week mark and it had been two weeks after the Mask fitting. I called the Radiation Oncologist and he mentioned to me that he does not plan the angles of the Radiation beams and doseages alone.  A Physicist works that out along with the Radiation Oncologist. It was a total of 8 weeks from time of the Surgery to the first Radiation treatment.

Sometimes waiting to start is just as hard as going thru the treatments. Like you, I wanted my cancer out of me, the sooner the better in my eyes.

My Best to You and Everyone Here

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

My husband had two weeks between the mask/planning session and the start of radiation. In those two weeks, he had another biopsy, met with the chemo doc, had a PEG put in, and had another biopsy. So while we were anxious for him to get started, there were several things that had to be done before he could start rads. There wasn't a lot of time to sit around anxiously waiting because he was going to a lot of appointments. I hope you can get some solid info on when you'll start, it's so hard not knowing.

phrannie51's picture
phrannie51
Posts: 3819
Joined: Mar 2012

the enlarged lymph node in January, 2012....I wanted them to tell me what and why it was there, and it wasn't until March 26th that I got the definative answer....that took 3 months and was making me a wreck.  I got the mask 4/5/12,  my port 4/12/12 (where they nicked my lung, so was in the hospital a week, got my PEG while still in the hospital on 4/18......treatments finally started on 4/24/12 (rads and chemo started the same day). 

LOL....now I've got that song playing over and over in my mind....

p

Ladylacy
Posts: 507
Joined: Apr 2012

My husband was diagnosed with laryngeal cancer in July 2010.  He started radiation and chemo about 6 weeks later.  Second diagnosed of cancer at the cervical of the esophagus was in mid-April 2012.  He started another round of radiation and chemo in late May.  Mask was made both times and treatment started within one week.  Each 35 radiation treatments were done at two different places.  The second time at Emory Winship Cancer Center because that is where he had his laryngectomy and it was that surgeon that found the second tumor one year later during a procedure for a TEP.

cureitall66's picture
cureitall66
Posts: 874
Joined: Aug 2012

Felt lump in mid July and went to Primary Physician went through routine antibiotics, then ultra sound and MRI, was referred to ENT.

Aug 15, 2012 Biopsy of Neck (ENT)

Aug 24 EKG clearance (due to prior heart attack & bypass)

Aug 27 Additional Biopsies to find primary

Sept 13  Tx Center- U of M- Pet Scan -Met with ENT

Sept 17 Board of Doctors reviewed case

Sept 21 Met with Radiologist

Sept 28 Dentist & Fitted for Mask

Oct 8 Started tx

Nov 27 Ended tx

Hope this helps.

DX: SCC BOT, 2 lymnodes involved, HPV+  TX: 7 wks Chemo (Carboplatin & Paclitaxel), Rads- No Surgery   

~C

 

 

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Seems like it really is a couple of months give or take to get everything in place for treatment. It's still frustrating knowing this beast is throwing a beach party in your head and neck and there's nothing you can do about it. However, I have a feeling that "Jack" bears no resemblance to Annette Funicello.

;)

 

"T"

cureitall66's picture
cureitall66
Posts: 874
Joined: Aug 2012

T,

I remember my loved one feeling the same way as you and it was driving him crazy. Someone (think it was Billie67) said she felt the same way and her doctors told her that it doesn't grow as fast as our minds like to think it does. Knowing and thinking that really eased our minds. It's swollen right now and is to be expected. His appeared bigger prior to tx also. Try not worry, they will get it very soon.

~Cureitall....NEVRSTP Fighting..

BTW....Love Tom Petty...Song that comes to mind is "I Won't Back Down".

 

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

T,

What I’ve noticed is a variance on timeframes here.  Lucky for me (from a worry standpoint), mine was fast.  The sooner, the better – but a lot have had a bit of a wait on here.  You'll be good:

·         Initial dx – 1/8/10

·         Second opinion – 1/13/10

·         Biopsy – 1/15/10

·         Tonsillectomy & Neck Dissection – 1/21/10

·         Start 7 weeks of rads concurrent with 3 chemo (cisplatan) -  2/22/10

·         Rang da bell – 4/12/10 (actually no bell at my facility – but I love the idea of the bell)

 

Here’s hoping it gets moving quick for you Dude!  Sending you some good mojo!

Greg

ps- can't event think of the words of that song -i  just like Floyd - meant as a positive thing (plus I'm old and that's the only "time" song that came to mind)

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

...Tom Petty songs in my set. My fave is a version of "Free Fallin'". My own original take on the tune. Goes over like gang busters! :)

I'll have to check the T&C but maybe I can post a link to a live performance vid...

"T"

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

diagnosis early April, 2012...rads and chemo started about 6 weeks later. in between was a whirlwind of appointments, scans, endoscopy, hearing test, dental checkup & cavity filling, PEG tube & chemo port insertions, and erbitux "loading dose". didn't seem like much time wasted to me.

I actually had a slightly different experience with the waiting...my ENT is Taiwanese, I lived on Taiwan for many years, and have even had their national health insurance. when I raised the possibility of getting treatment in Taipei (which would have delayed things by a month or two)--she stongly suggested that I should not take any delay--time was of the essence. I do believe that they got me into tx as fast as possible.

and of course I'm very satfisfied with the treatment I got here in ohio, although it was considerably more $$$$ here.

 

Greg--you beat me to it.

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

You guys have got me humming - I started singing as soon as I saw the thread title. 

T2N2MO Base of tongue - both affected nodes on right side

Sept 25 or 6, 2009 - found a lump in my neck (it was really big - how did I not find it earlier?) - Urgent care gave me antibiotics

about 3 weeks later, PCP sent me to ENT - FNA and scope - test sent out to check for Cat Scratch Fever (really)

Oct 25 or 6 - Open biopsies and tonsillectomy - period between surgery and start of chemo sucked - pain and inactivity on the battle front, combined with uncertainty on where to go for treatment made me crazy

Mid Nov - Decision made, PICC line installed the next day, Induction Chemo started

Dec 19 - hospitalized - neutropenic fevers of unknown origin - feeding tube placed Christmas Eve (didn't need it then, but since I was already in the hospital . . .)

Late Jan, 2010 - mask made, simulation run - chemo rads started the following week

Mid March - rads done

Dec 21, 2010 - Radical Modified Neck Dissection done to finish the job

April, 2011 - CLEAN SCANS!

I have been told that most cancers develop over a period of 5 to 40 years - wow.

 

 

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi Pam,

5-40 years? That's an interesting bit of information. The doctors have all said the reason that I have an unknown primary is that it either been consumed by my body or hiding in a sub-mucousal area in my head and neck. When I think about things in retrospect, back in the summer of 2009 I developed a very bad case of swollen lymph nodes on the left side of my neck. We're talking chipmunk cheeks size. I recall specifically the night it started when I had a very strange feeling and burning in the back of my mouth. I went to the doctor and they swabbed me and said it was strep throat. Funny though, I didn't have any throat pain at all. The antibiotics did get rid of the swelling though. Now, as all this is unfolding in the present, I'm wondering if that was the start of this. By the time I noticed something wasn't right last August, "Jack" had probably been in me for some time.

"T"

 

CivilMatt's picture
CivilMatt
Posts: 3062
Joined: May 2012

T,

 

Forever etched in my Brain (and written down for when I don’t have a brain)

 

Nov. 11, 2011 – felt lump in neck while shaving

Nov. 14, 2011 – appt. with GP, told to wait a week to watch

Nov. 15, 2011 – blood test

Dec. 7, 2011 – ENT, FNA (twice)

Dec.  12, 2011 – surgery neck and tongue

Dec. 23, 2011 – you have CANCER!

Dec. 29, 211 – meet rad onc, watch video, take picture IT IS ALL TO REAL!

Jan. 3, 2012 – meet chemo onc , meet ERBITUX!

Jan. 5, 2012 – mask making 101

Jan. 12, 2012 – PICC placement

Jan. 13, 2012 – loading dose Erbitux

Jan. 19, 2012 – colonoscopy, endoscopy, PEG installed

Jan. 19-30, 2012 – hospital stay, Ileus lower tract shut-down for 12 days

(delays treatment for 2 weeks)

Feb. 6, 2012 – start rads

Feb. 10, 2012 – start regular Erbitux

Feb. 27, 2012 – 2nd PEG

March 23, 1012 – finished rads & Erbitux

 

End of December wife finds H&N forum, starts getting ready for inevitable.  Drinking water and swallowing becomes our mantra (best advice I could get from veterans)

 

There you go, I hope it helps you stay mellow.

 

Matt

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi Matt,

 

Thanks for the info. Although I've mellowed considerably in the last 7 years, I'm still a type A personality and one of the downfalls is a lack of patience in certain situations, especially those that relinquish my control. That's part of the challenge for me. I have my moments of realtive calm and acceptance but sometimes...... ;)

"T"

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

So I was supposed to get a call today from the head of Oncology at Winchester Medical. It didn't happen. I had his number on my cell and left a voice mail. Still nothing. In my business, when I say I'm going to do something, I do it. If I can't accomplish the task, whatever it is, I still call the client as a courtesy even if I don't have the best news. This doesn't sit well with me.

I saw the social worker/patient guidance counselor at the hospital today when we attended the chemo class and I mentioned that I had spoken with him and that he was to return my call with some information. When I voiced my concerns about the follow up and appointment setting, she said I was welcome to let them know on my patient survey? Really? On the other side, the class my partner and I attended was very comprehensive. We were given a bunch of information and that instilled some confidence as far as the actual infusion sessions are concerned. 

I like the doctors I've been referred to, especially my chemo doc but I don't have a good gut feeling about things. Conpared to the response I've gotten from Johns Hopkins, this place seems more like it's run by the Three Stooges. I'm waiting to hear "Calling Dr. Howard, Dr. Fine and Dr. Howard" anytime!

I don't really have a choice on a place of treatment due to my location so I feel like I'm between a rock and a hard place. 

Perhaps the "squeeky wheel gets the oil" approach is warrented. I'm looking forward to tomorrow and my visit to Johns Hopkins. At least I'll know if the treatment plan is concurrent with their findings.

"T"

 

ditto1
Posts: 634
Joined: Mar 2012

Nice to meet you sorry its on this forum.  I was dx in March 2012 and I did not get started with tx until May.  Stumbled thru two Ents and that put me behind a month.  But one thing Ive learned its not a oh you got cancer check in tommorrow and we will get started, its more like hurry up and wait.  But as others have said once they do buckle you up for the ride its non stop until the treatments are over.  So welcome to the Hey I have Cancer anybody out there club.  They are out there and once it gets started it will seem like a blink of the eye and it will be over, my opinion.  I think its like life in general, I used to say this has been a long day at work and then I would think where did the 37 years of working go,, so life is short so in fact everything we experience is faster than we realize.  Bla bla bla, hope you get my main point.  You get ready and before long you will be posting how its nice to be done.

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Great tune by Jack Johnson....

Thanks Ditto and everyone. 

I guess it's part of the emotional roller coaster ride. I've just been feeling like I've been "sitting" in the front car "waiting" for the ride to start and "wishing" it would be sooner rather than later. 

"T"

ausrebel53's picture
ausrebel53
Posts: 74
Joined: Dec 2012

One thing is for sure Mr T., the growth will never be as "thick as a brick", it will be out of you before you know it.

regards

Michael

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi Michael,

I'm looking forward to getting "Jack" out of my body and here's to not having it return as "Aqualung"!

"T"

Laralyn's picture
Laralyn
Posts: 454
Joined: Apr 2012

...but then again, so did the cancer. I had a clear CT scan of an enlarged lymph node and nothing showing when there was a tickle in my throat in late November 2011, and by mid-March 2012, there was a visible mass pressing on the back of my tongue from the soft palate. I remember my radiation oncologist mentioning a trial starting "in a couple months" at the hospital where he practiced, but he said, "You can't wait." 

I was diagnosed around March 25. The oncologist met with me a couple days later, and sent me straight to the dentist. They pulled a wisdom tooth and while it was healing, the technicians did the pre-radiation planning scans. The oncologist came straight from the airport (coming from a conference) on a Saturday to do the mapping so they could start treatments the  first day it was feasible (waiting for the wisdom tooth extraction to heal).

I went from diagnosis to my first radiation and chemo treatment in two weeks. I think it was a special case, though. 

A big part of the process is trust. I'm kind of a control freak for many aspects of my life so I had to learn to trust the medical professionals to understand the situation and do what was best for me. They did, and I'm sure the folks treating you will too. Get a second opinion for sure, though, because being comfortable with the people treating you is really important. You'll also be seeing these folks A LOT over the next few months. :-)

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi Laralyn,

Wow, that was fast! I'm heading out shortly to Baltimore and Johns Hopkins for a 2nd opinion. I'm not feeling so warm and fuzzy about the treatment center I have to go to. If I were in a financial position to do so, I would take off two months and hole up in Baltimore so I could be treated there. I have a friend who recently went through this. He had BOT HPV related SCC. He couldn't speak any higher of the team at Johns Hopkins. He's now 18 months post treatment and still NED.

He said the entire team, from surgery to nutrition and even dentistry met all together in a room with him. All were there to answer questions and speak to him about his treatment plan before they started. Talk about instilling confidence! You're right though. Cancer takes so much control away from us and forces us to put our lives into someone elses hands. If you're going to do that, you want to feel some level of trust. 

"T"

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Good luck to day bro, hoping you have a warm fuzzy by the end of the day...

Best ~ John

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi John and everyone,

An update on my visit to Johns Hopkins.

Impressive is an understatement! I walked into registration, signed a privacy agreement and got a bar code badge. I then walked into the the outpatient area, scaned my badge and had barely turned around when a nuse said "Mr "T"?"

I was taken back, BP taken and weighed and then to an examination room. Within a couple of minutes (literally), a "TEAM" of doctors entered the room. A Surgical Oncologist (who happened to be my friend's doctor), a Medical Oncologist, a Radiation Oncologist, a Speech/Language Pathologist, an Oncology Nurse/Manager and the Center Coordinator all were there. I was poked and prodded more in the next 25 minutes than I had been since this whole thing started! Everyone at The Sidney Kimmel Center specializes in Head and Neck Cancer 24/7/365.

They knew my background and had reviewed all the slides, tests, images etc. They were stillwaiting on a couple of test results concerning HPV but what they saw thus far didn't indicate it. Knowing what I do for a living, they were particulary concerned and interested in preserving my voice.

Their assessment was 180* different then what I got at Winchester. They recommended robotic surgery (selective neck dissection) to remove the tumor. In their words "If we can get 99% of it out of you then that's less treatment we need to subject you to". If the tumor is still intact (encased), chemo may not be necessary. They also want to do robotic biopsies of the back of my tongue and larynx as several of the doctors saw and felt something worth checking into. With the cutting edge technology they have, they're able to identify the primary in better than 60% of the cases.

On review of the recommended therapy from Winchester, they were concered that irradiating such a large area could have negative and permanent ramifications on my swallowing ability and voice. Also, chemo in conjunction with that strong of radiation program could possibly put my overall heart health at risk. Basically, they're saying why do something that doesn't need to be done?

I still haven't heard back for the Head of Oncology at Winchester Mediacal Center. I called the Radiation and Chemo Oncologists office and told them to put the scheduling on hold as I need to make a decision on the direction of my treatment.

Johns Hopkins wants to schedule the surgery in appoximately 3 weeks. There will be a few weeks recovery from that and then treatment.

Choosing Johns Hopkins for my treatment means several things. In my opnion, a much better chance of surviving! It also means not working at all during the treatment as I would have to be in Baltimore 5 days a week. There are several unknowns financially but they do have free housing. I may have to look at alternative assistance etc. I'd also have to find someone to take care of our boy Socrates (Pixie Bob) while we're away as my partner will have to be with me.

I'm heading up to visit family and friends this weekend and I'll take some time to try and sort out everything.

Ohhh... by the way. I asked them at Johns Hopkins the time question and the average time between diagnosis and treatment is 4-9 weeks depending on the situation. They weren't too concerend that "Jack" was going to multiply like rabbits in the next few weeks.

"T"

Laralyn's picture
Laralyn
Posts: 454
Joined: Apr 2012

Good luck at the meetings! If you like the team at Johns Hopkins, could you ask them for financial resources that might allow you to get treated there? Is there any way you could work remotely? 

I was treated at a small regional hospital, but was lucky enough to have a recognized H&N expert practicing there. If you don't end up at Johns Hopkins, don't hesitate to ask questions here. We're not (usually) medical experts, but we can tell you what our treatment entailed and that might help you ask questions. For example, I was surprised to find that the radiation mouthguards that were standard in my treatments weren't even mentioned to a couple people as a part of their treatments!

I know the delays feel long when you're in the middle of them. Take advantage of the time as much as possible: see good movies, get some sun, and eat your favorite foods! :-)

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

The lack of response is totally unacceptable. Would you be able to drive in to Fairfax Hospital? Of course Hopkins is the cream of the crop, but too far for you to drive for daily treatment. My husband was treated at Fairfax - one of the radiation oncologists is a Head and Neck specialist.

 

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi Amy,

It's interesting you brought that up. The oncology nurse I met with suggested Dr Gopal Bajaj. He was a Head and Neck specialist at Johns Hopkins. I have some major decisions to make but that's definitely on my radar.

"T"

 

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

He was my husband's doc. I really liked him, he's a very nice man and seemed to know what he was talking about. Everyone in the radiation dept at Fairfax was very kind.

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

My Dad - Base of tongue with multiple lymph nodes.

Diagnosed - May 30th 2012

Making and fitting the mask - mid of July 2012

First chemo and rad - the end fo July 2012.

 

So, it was two months before he started treatment. During this time he felt a swollen lymph node on the other side of his neck. At the time of diagnosis he had confirmation that only left side of the neck was cancerous (left lymph nodes and base of tongue). But waiting period made cancer progress a bit and the node was visible also on the other side. It freaked me out. But the doctor said that ther expected that and that it will not do much harm to him. Well.... I could do nothing about that. Waiting part is the worst, I know.

Grandmax4's picture
Grandmax4
Posts: 594
Joined: Dec 2011

I was dx in September 2011, saw my Fantastic surgeon , met his team in October 2011, I remember telling Him, we have a trip to Chicago planned, should I cancel? No, no go and have fun..really?!! Anyway, then came scans,tests, a meeting with a Dr to determine if I was able to have surgery, etc,etc...my surgery, done by the de vinci robot, was done November 2, 2011. I was lucky and blessed that none of the nodes showed cancer, so avoided chemo and radiation...I'm due for a check-up in February 2013, I can't say I'm completely without worry, but, I stay so busy...babysit my 4 year old Grandson, that I don't dwell on it...Good luck, I hope you are able to do all you have planned, work, etc~~please keep us up-dated~~Peace 

sassysrice's picture
sassysrice
Posts: 117
Joined: Nov 2012

As John said it all depends on where you live and how the center is run. Jeff saw the ENT on Nov 13 biopsy on Nov 19th. Nov 28  met Rad dr had mask made and got schedule for 35 nukes. Started on Dec 11. The doctor gave him 2 weeks to put on a few pounds.

Met Chemo dr Dec 5 and schedules 7 weekly chemo on Fridays with the first starting Dec 14.  We will be done Jan 31st. Don't know about follow up tests yet.

We have an appt with Chemo Dr Feb 8 and ENT Feb 22.

I hope by the time I post this you got your schedule. But take this time to eat eat and eat especially all the foods you love and wouldn't normally eat like ice cream cake for breakfest and hot fudge sundae's at midnightTongue Out

Sue

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi Sue,

Sounds like you guys are humming along in treatment. My very best wishes to your husband for a positive outcome.

I mentioned in my first post about eating all the foods I want to eat before I start treatment and I've been doing so and will continue to do so until I physically can't or when my tatse buds are fried. This will include healthy amounts of Thai food... spicy please... hurt me don't kill me hot! My gauge is, if it make my nose run, it's hot enough :) I do have a weakness for ice cream. Breyers please! 

I'm encouraged by the many that have said my taste will come back. I will be counting the days when that time arrives ;)

"T"

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

This evening at 5:30pm I got a call from the Head of Oncology at Winchester Medical. He told me they had finished the initial planning and it looked good for me to start Wednesday of next week. All they had to do was get the OK from the Radiation Oncologist. 

I asked if they had contacted Chemo Oncology and when my chemo would start. He didn't have an answer and stumbled on the question. He didn't know that I had already called the Radiation Oncologist and the Chemo Oncologist and asked that they put everything on hold while I decide on what path to take in treatment several hours earlier. When I called the Chemo Oncologist's office, I was put through to a nurses voice mail and left a message at around 2pm this afternoon. The call was not returned. 

After he finished speaking, I informed him on what had taken place as well as my appointment and 2nd opinion at Johns Hopkins. I also, as nurturingly as I could, let him know that his lack of follow up and the fact that it seems as if one hand doesn't seem to know what the other is doing, has severely shaken my confidence in their ability to treat me. My partner has had her doubts as well as she's been with me for every appointment. 

I have many aspects of my life that have to be arranged and accounted for to make treatment at Johns Hopkins work. My employment situation is one. I'm fortunate that I truly believe I can work something out with my boss to be able to take medical leave for treatment. The law actually protects me and he would be compensated by the government while I'm undergoing treatment. I'm not a man of means by any stretch of the imagination but have family that are stepping up to help a bit. I believe I can eek by financially while getting treatment. 

I've made the decision to seek my treatment at Johns Hopkins. As the 3rd highest rated cancer center in the nation, I stand the best chance to eradicate "Jack" from my system and retain the best quality of life. I can't tell you how comforting having all those Knights and Knightesses in white all standing around me looking down my throat made me feel ~lol~ Sounds funny but when you hear things like "Go back...down... yes... right there... do you see that on the anterior edge?"... and then three different fingers poking down your throat affirming something they suspect, it instills a bit of confidence these folks know what they're doing.  

As it stands now, I'll be hearing from the Surgical Oncologist next week to schedule the surgery. Ironically it will fall very close to my 54th birthday. Nice present eh? Then it will be about three weeks of healing before treatment starts. It could range from rads only to a combination of chemo and rads but that will remain to be seen. Regardless, I feel much more confident and safer with the path I've chosen and know that they have my best interests at heart. 

I can't say thank everyone here on the boards enough for the warm reception, response and encouragement. To have a sounding board such as this is quite a blessing and I'm glad I found you! 

In many instances, an internet forum is just a fantasy. On dating sites, news forums and the like, you're no more than a thumbnail and words on a screen. It's not "real". In this instance however, there is a bond unlike any other in an internet setting. We're all warriors, not unlike the brother and sisterhood of the military in the battle we're fighting.

Here's to VICTORY!  HOOAH!

"T"

 

 

phrannie51's picture
phrannie51
Posts: 3819
Joined: Mar 2012

John Hopkins!!  Confidence in your team is so damned important!!  The fact that they can do this with less invasive treatment with a higher rate of survivability....plus less damage....and less impact on your life just shows us all that the varying quality of treatment out there is plain scary!! 

Your recovery wil be faster, and so using your FMLA just makes sense.....your employer has to follow the law, but I think too....they WANT you to come back whole.  This little bleep in your life will become history in just a short time, and everybody will get back to normal. 

So....from me, you get a giant PHEW.....things are going to be ok. 

p

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Phrannie,

Thank you!  

One of my favorite artists of the 70's was Pat Benetar. I had it bad for her ~lol~ 

This song speaks volumes for the battle we face. 

INVINCIBLE - Pat Benatar

"This bloody road remains a mystery
This sudden darkness fills the air
What are we waiting for?
Won't anybody help us?
What are we waiting for?
We can't afford to be innocent
Stand up and face the enemy
It's a do or die situation
We will be invincible!

This shattered dream you cannot justify
We're gonna scream until were satisfied
What are we running for?
We've got the right to be angry
What are we running for?
When there's no where we can run to anymore

We can't afford to be innocent
Stand up and face the enemy
It's a do or die situation
We will be invincible
And with the power of conviction
There is no sacrifice
It's a do or die situation
We will be invincible!

Won't anybody help us?
What are we running for?
When there's no where, no where we can run to anymore

We can't afford to be innocent
Stand up and face the enemy
It's a do or die situation
We will be invincible
And with the power of conviction
There is no sacrifice
It's a do or die situation
We will be invincible!"

Sing it loud and sing it proud!

"T"

Laralyn's picture
Laralyn
Posts: 454
Joined: Apr 2012

Now you can move ahead, feeling confident and positive! You'll be in good hands, I'm sure. If you end up with any issues over employment leave, etc. you can consult the Cancer Legal Resource Center for help. People undergoing cancer treatments are generally covered under the Americans with Disabilities act at the federal level, and are often also covered at the state level too!

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Thanks Laralyn,

The more I learn, the more I feel there's a light at the end of the tunnel. 

"T"

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

1/4 of the way thru reading your post Decisions, decisions! i mentioned to myself for me if i had John Hopkins for an option that is what i would choose and said i need to post that when done reading. Bam! Bam!

then it was you made up your mind. i was so thrilled for you, your partner, your family and friends. the positive feeling you will caring by having the huge confidence in your doc's and nurses is priceless. 

Congrats on your choice!

john 

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009
George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Have you looked into applying for Social Security Disability to help you with your finances?  Hope your stay in Baltimore is as pleasant as possible under the circumstances.  Hopkins is a great institution but don't wander (walking) too far from the campus.  It's not in the greatest of neighborhoods.

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi George,

SSD is one of the options I'll be looking into as well as others. There's much to do in the next few weeks to prepare for the journey. Housing while I'm there, finances etc.  I'm going to contact Johns Hopkins on Monday and start the process. I need to speak with their social worker concerning options available to me. I hear you about the neighboorhood, I drove through some rather questionable areas on the way there yesterday. But from what I've heard, I'm probably not going to be wanting to go walking for a while although I'm going to try to keep moving as much as possible. 

"T"

donfoo's picture
donfoo
Posts: 1316
Joined: Dec 2012

I'm glad you were able to make such a quick and decisive decision, especially since the differing opinions were so vastly different. Having trust in your team is so critical and surely played a significant part in your decision and based on what you report your experience has been, it is easy to see on that count to understand your decision.

You placed your trust in a top cancer facility so that is comforting. You'll be quite busy now with added checklist of getting physically located near the care centers on top of a number of other visits you'll have before treatment gets officially going. 

Don

Laralyn's picture
Laralyn
Posts: 454
Joined: Apr 2012

I saw Cee Lo Green perform this song on The Voice when I was just starting treatments. I listened to it almost every day on my way to radiation.

Fight to Win!

Here are a few of my favorite parts:

I have no choice but to trust in God because it must be done.

My only fear is what might happen if I didn't fight to win.

If I lose, then it was worth fighting for.

If I win, then I only live to fight again.

...

Believe me, it won't be easy, but it's surely not impossible.

And if they won't listen, save your breath and save yourself.

And as soon as you see sunlight again, GET UP and FIGHT your way out!

 

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