Posted By: Jay Jeong Concerns over PET scan - 10-09-2012 11:54 PM
Hi all,

A few days ago, my wife went in to get her PET / CT scan done as a precaution as she was unable to do her PET prior to surgery due to her being 32 weeks pregnant at the time (she did have her CT scan & MRI pre-op).

She had only recently had surgery (11th of September) which involved a partial glossectomy (2/3 of oral tongue), Neck dissection Level I-V and tongue reconstruction using her leg flap.

Unfortunately, we got a call from the docs this morning saying that on the PET scan, they saw 'unusual activity' near the base of her tongue which was of particular concern and a bit of activity near where her lymph nodes were removed on the left side of the neck.

CT scans did not show anything definitive and I know there is a high false-positive rate on PET scans particular so close to post-op but am still very worried..

We were expected to start treatment on the 24th of October with 6.5 weeks of Radio / Chemo but they have now put this on hold until the doc's further examine Jenny.

Anyone have any similar experiences or able to shed some more light on this if possible? Am I safe to assume they will do a visual check as well as a Fine Needle Aspiration?

Thanks in advance..

Kind Regards
Jay
Posted By: Kelly211 Re: Concerns over PET scan - 10-10-2012 07:44 AM
Jay,

I have never heard of a PET scan being done this close to a surgical procedure or for that matter any treatment. I would very much question any positive results showing on a PET after the amount of surgery that was performed.

I would definitely question your doctor about any changes he or she has made in treatment going forward based on these results.
Posted By: Jay Jeong Re: Concerns over PET scan - 10-10-2012 08:56 AM
Hi Kelly,

We had the PET scan to see any distant metastasis as Jenny was unable to do it prior to surgery due to her pregnancy.

I know that a PET scan so close to the surgery date is very inaccurate (I read somewhere almost 90% if it is conducted within 4 weeks of surgery + even more in the case it involves BOT), so I was surprised when I got the call this morning from the Radiotherapy specialist (not the doc) telling us that we needed to see the ENT doctor asap.

Perhaps he didn't know much about my wife's diagnosis & treatment till date and he jumped the gun when he saw 'active' hot spots on the PET scan?

I know it is near impossible to make conclusions with PET scans in this situation but I am still one nervous wreck at the moment..
Posted By: ChristineB Re: Concerns over PET scan - 10-10-2012 12:54 PM
Try not to panic. You are correct with your info about having a PET scan done so close to the surgery date it will be inaccurate. A major surgery will have inflammation for weeks and that will light up on a PET.

Please keep us posted as to the progress.
Posted By: emilyp Re: Concerns over PET scan - 10-10-2012 02:45 PM
I was diagnosed a year ago (three clear CT scans since smile ) but I have never had a PET scan - or at least not since I finished treatment. Is this normal? I go to MD Anderson and they said the PET scan is not needed, but it seems everyone on this site gets PET scans. I was just curious if I should get a second opinion!
Posted By: Kelly211 Re: Concerns over PET scan - 10-10-2012 04:53 PM
Emily,

My brother was treated at MD Anderson at about the same time you were. He was told the same thing about PET scans. They only do CT's with him. His wife is a bit concerned about that and is thinking of pushing for a PET.

I think this is also being driven because of my situation. I had requested a PET on my one year anniversary and was denied. They felt I was doing just fine. What they didn't know was that I had a tumor deep in my neck that they could not feel. A CT would have picked it up eventually but my doc's were sure they had nailed the cancer. That was at my local hospital in Grand Rapids, Mi. which was associated with the CCC at U of M.

I moved over to U of M to treat my recurrence.

Keep in mind that PET scan are very expensive ($6,000) so hospitals are reluctant to order one unless some physical symptom warrants one. Mostly they do CT's
Posted By: Maria Re: Concerns over PET scan - 10-10-2012 10:25 PM
A PET scan also means additional radiation - another reason besides the cost to be conservative with their use. My husband's ENT said that the subject of follow-up scans was a hot topic at all the conferences he attended this year. Assuming a continued lack of signs and symptoms, my husband will have a chest xray at his 2 year followup, in addition to the physical and endoscopic exam.
Posted By: Jay Jeong Re: Concerns over PET scan - 10-11-2012 02:16 AM
Hi all,

Just a quick update from our meeting with Dr. Nick, our ENT doctor.

He had a close look at the BOT and saw nothing to suggest that it was a re occurrence, and it will be more than likely that it will be false-positive.

However, he wanted to go with the senior doctors & the radiotherapy oncologist (who is different from the one who broke the news to us) through the scans once more, and have told us to come back next Wednesday morning where they do patient clinics and the entire crew of doctors are there (usually upwards to 25 doctors.. it is an AMAZING system they have here).

Apart from that, he said the wife was recovering remarkably well and that she will still be going through radiotherapy & chemotherapy as per schedule (24th of October).

Not entirely out of the woods yet and its another week of waiting to get the all clear but the news could have been much much worse so I am grateful for what I heard.

Thanks to everyone who provided us their words of advice and I will make sure to keep you all posted when we get the final results next Wednesday

Kind Regards,

Jay & Jen
Posted By: tina77 Re: Concerns over PET scan - 10-11-2012 03:54 AM
Glad to hear that Jay. Good luck to you on the follow up.
Posted By: Jay Jeong Re: Concerns over PET scan - 10-11-2012 04:18 AM
Hi Tina,

Thanks for the well wishes. How are you going at your end?

Good luck with your surgery tomorrow and I am sure all will go as plan.

We will keep you in our prayers, and look forward to hearing the good news from your end soon!
Posted By: davidcpa Re: Concerns over PET scan - 10-11-2012 12:20 PM
At Moffitt I had a pre Tx PET and that was it. None Post Tx.
Posted By: Jay Jeong Re: Concerns over PET scan - 10-11-2012 01:40 PM
Yeah - they rarely do PET scans within 3 months of surgery but in this instance they did due to my wife was unable to do it pre tx as she was 31 weeks pregnant when she was diagnosed..

The reason why they conducted the PET so close to the surgery date was because they wanted to be absolutely sure that the cancer had not metastasised to other parts of the body (we had an Mx as part of the diagnosis due to this) as one of her lymph nodes did burst and was showing leakage..

Anyways, looks like the primary concern of the distant metastasis to the lungs & livers look like it is all clear, and hopefully we get the all clear with this 'activity' we see near the BOT where they operated on..

Feels like it is still a long way to go with 6.5 weeks of Radiotherapy & Chemotherapy, and this recent ordeal has not helped at all in settling the nerves and taking it easy until treatment date frown
Posted By: emilyp Re: Concerns over PET scan - 10-11-2012 03:27 PM
Good luck! The waiting is the worst part - the radiation and chemo goes by faster than you think.

And thanks for all of the input about PET scans, I have been wondering for some time and when my doctor told me I didn't need one, I was aprehensive to insist, as I didn't want to come off seeming like I knew more than the doctor. I might request a PET at my one year post-treatment check-up, just for peace of mind.
Posted By: AnaD Re: Concerns over PET scan - 10-12-2012 01:02 PM
Emily, we just went through this with my husband. He completed treatment on August 31st, recently had CT scan, got the results last week (all clear). There was some discussion about whether he would get a post tx PET. It is standard of care at University of Chicago. The tumor board weighed the fact that my husband had a heavy burden of tumor, lots of nodal involvement vs. his outstanding first CT results...decided he should be offered the PET. That said, we were told by the med onc that if we had pushed back, they would not have insisted, that it was a tough call. We have decided to opt for the PET, which will happen in mid-December. We are concerned about the extra radiation, but at this point, seems like a drop in the bucket vs peace of mind.
Posted By: Jay Jeong Re: Concerns over PET scan - 10-12-2012 10:59 PM
The doctors told us that it is very rare for a patient to be offered a PET scan within 3 months of surgery.

As per my posts, Jen was an exception and you can see why they are so reluctant to give them out so close to the treatment date - it is very difficult to interpret the PET scan results!

Ana & Emily - if it has been past 10 weeks since you finished your treatment, then a PET scan is definitely something that you should get.
Posted By: Jay Jeong Re: Concerns over PET scan - 10-16-2012 11:54 PM
All clear with the PET/CT scans - yes, they were false / negative.

Highly recommend AGAINST having a PET/CT scan within 3 months of Post-op as the accuracy of these reports are very low.

Now to get ready for the next round of Radiotherapy & Cisplatin...
Posted By: samkl Re: Concerns over PET scan - 10-17-2012 05:44 AM
Good luck Jay and Jen, I've been following your story. It's nearly 12 months since my brother finished treament and the time has just flown, but when you're in the middle of it all you can't see the finish line.
But you'll get there, so enjoy that beautiful baby, and take millions of photos and video clips of the new Bub, just in case you look back in 12 months time and it's all a blur because of Jen's dx and tx - a baby's first 12 months is just magic. Linda
Posted By: Jay Jeong Re: Concerns over PET scan - 10-20-2012 12:55 PM
Hi Linda,

Thanks for your kind words.

We had a great family day out at the Dandenong Ranges down here in Melbourne, and we are all trying to take it one step at a time.

My wife says she feels almost 'normal' 3 weeks out of surgery, and has healed up so well from both the pregnancy and operation.

I don't know how I will react once I see her start her treatment from next week and it is quite a confusing time for both of us where we are able to go on with our daily lives as usual, but still know there is a long way to go until we are all clear from the C word...

Baby is definitely a huge motivation and holding onto our faith really has helped us so far so we can only pray it will be the same this time around as well.
Posted By: Jay Jeong Re: Concerns over PET scan - 10-24-2012 05:39 AM
Tx started today with her first dose of chemo & radiotherapy.

Everyone was pleasantly surprised to see that Jen had packed on almost 3.5kg's since being discharged post-op, and that she had regained much of her speech & was able to eat certain solid foods considering she had a significant portion of her tongue (approx. 75%) removed only 6 weeks ago.

Both went well and she is showing no signs of the chemo side effects (nausea, fatigue, metallic taste etc.) as yet and same with radiotherapy.

We pray that this continues to be the case throughout her treatment and I am a strong believer that the worst is over and done with - the waiting game!

Will keep our status posted over the next few weeks until treatment ends and I hope this information will come in useful for others who are looking to embark on this journey..

Kind Regards
Jay & Jen
Posted By: Gabe Re: Concerns over PET scan - 10-24-2012 08:53 AM
Wishing you all the very best for Jen's treatment and it was good to read her first one went well.
You will have done a lot of reading here and know it is not an easy journey but doable.
I will be following your updates and hope that they continue the way this first one started.
Love to you both,
Gabriele
Posted By: Cheryld Re: Concerns over PET scan - 10-24-2012 12:01 PM
So glad she's doing okay - things will get worse but hopefully be manageable - hugs and blessings to you.
Posted By: Jay Jeong Re: Concerns over PET scan - 10-24-2012 12:25 PM
Thanks Gabe & Cheryl.

Definitely buckling up for the ride ahead but praying also it will be as smooth as possible..

As the old saying goes 'when it rains it pours' and unfortunately, my grandmother passed away two days ago and I was unable to attend her funeral which was today as it coincided with my wife's treatment and she lives quite a distance away..

I spent the better part of my childhood in her arms and I am certain she had her arms around myself and Jenny today through treatment and that is why we breezed through smile

The Lord does move in mysterious ways and despite the adversities, I have a feeling that everyone involved in this experience will come out for the better..
Posted By: Jay Jeong Re: Concerns over PET scan - 11-01-2012 09:52 AM
Hi all,

Jen has now finished 2/7 chemo therapy sessions & 7/33 Radiation sessions so far.

So far so good although she has been saying that food tastes a bit saltier than usual and has around a minute per day where her hearing goes a bit funny.

All in all we are still in high spirits and not only is she maintain her weight from pre-tx but also we are continuing to eat solid foods such as rice & noodles.

We had our son's 2 month immunization shots today, and cannot believe it has been that long since we started the journey to recovery..

Praying very hard that Jen continues on with her treatment well until the very end (+2 weeks!) and wish everyone else who are currently undergoing or is looking to go into similar treatment as us all the best.

Kind Regards
Jay & Jen
Posted By: davidcpa Re: Concerns over PET scan - 11-01-2012 12:32 PM
If she is experiencing hearing issues AND she is being given Cisplatin TELL HER MO IMMEDIATELY as those issues are the result of permanent damage being done to her hearing. Her MO will switch her to Carboplatin for the remaining treatments.
Posted By: Jay Jeong Re: Concerns over PET scan - 11-01-2012 01:02 PM
Hi David

We have our meeting with both our MO & RO tomorrow so will definitely bring this to their attention.

Posted By: Jenkensmom Re: Concerns over PET scan - 11-01-2012 11:51 PM
Hubby is on Cisplatin also. Because of the hearing loss issue with that chemical, his ENT did a baseline hearing test and will continue to monitor it throughout treatment. I was relieved to know it was being monitored.
Posted By: Jay Jeong Re: Concerns over PET scan - 11-02-2012 05:01 AM
Had our meeting with our MO & RO today.

The 'ear' problem was more close to the type of effect you have when you are on a airplane when it becomes 'blocked' rather than a ringing sound that you get after being at a rock concert.

Furthermore, it wasn't an ongoing issue but short 10-15 second bursts once ever 2-3 days.

Hence, both the MO & RO agreed that this was not due to the Cisplatin but in fact the Radiotherapy as it can impact the drainage system from the ear to the neck.

They were very pleased with how Jen was going with the treatment, and told us they will keep a close eye on it over the next few weeks (we have weekly meetings with both of them).

So far so good but the Dietician and the head RO both warned us that we should be prepared for the Radiotherapy side effects that usually start from week 2-3 so we are holding on tight and trying to get as much nutrition in as possible.

Also bought 24 x Fortesip / 24 x Sustagen / 24 x Ensure just in case we need some back-up with the diet as well.

Will keep you all updated on how we go over the next few weeks. I n the meantime, we have our baby back with us for the long weekend as it is a public holiday here with the Melbourne Cup (Horse Racing) on next Tuesday.

God bless and our prayers are with all those who continue to battle this disease.
Posted By: davidcpa Re: Concerns over PET scan - 11-02-2012 12:54 PM
Diane,

If he hears what they call "ringing in the ears" which can sound different to different people, make sure he let's his MO know ASAP as that ringing is actual irreversable damage. Monotoring is only beneficial IF action is taken to stop the damage once known.
Posted By: Jay Jeong Re: Concerns over PET scan - 11-07-2012 01:40 AM
Hi all,

Jen has now completed 3/7 Chemo & 10/33 Radiotherapy sessions.

She continues to eat ok (we are still above our pre-tx weight) although she is starting to feel the side effects associated with the Radiotherapy - salty taste with specific foods / dry mouth & slight irritation with throat.

She has also started to lose a bit of hair and had to get a PICC line inserted today as her veins were 'bursting' when the nurses were poking her with the needles..

So far so good and we are working very hard to keep nutrition & fluids up.

I did however have a question for those who have gone through this process in the past - Her WBC has been steadily dropping since chemo has started, and is currently sitting just slightly above the reference range (4.0-11.0 10^9/L). PLT counts have also halved from 624 - 304 and her HB count is decreasing as well. Is there anything we can do to increase these naturally during her treatment?

Thanks.

Jay & Jen
Posted By: tamvonk Re: Concerns over PET scan - 11-07-2012 06:16 AM
The main worry is the White cell count and this is usually hit hard by the chemo. There is nothing you can do to counter this. I would recommend that you stay close to home and don't put Jen at any risk of catching an infection from others. This is a not unexpected response to the chemo. And is quite common. Kris's WCC got as low as 0.4. His 2nd cisplatin was delayed a week and he did not get the third dose. We were told that studies showed no difference in outcome for those who did not complete the whole chemo course.
You just have to wait for the bone marrow to recover from the chemos toxic hit. This applies to the Hb and platelets too. Wishing you both well,
Tammy.
Posted By: Jay Jeong Re: Concerns over PET scan - 11-07-2012 07:57 AM
Thanks a lot Tammy.

Although we are currently in Melbourne, I am originally from Dunedin and it's great to hear advice from a fellow Kiwi.

Understand that HB, WBC and Platelets are hit hard from the Chemo but was just curious if there was anything we could do to slow down this decline.

Will make sure to take your advice around being safe from others while we are undergoing treatment.

Thanks
Posted By: ChristineB Re: Concerns over PET scan - 11-07-2012 11:52 AM
Unfortunately there isnt much you can do to prevent the numbers from dropping. A balanced diet might give a small amount of help.

If the white count gets too low the docs will give a Neupogen shot to boost them back up. I had to get a couple of these while going thru treatments. My white counts were very low for a good 3 years.

Posted By: Jay Jeong Re: Concerns over PET scan - 11-13-2012 02:16 AM
Hi all,

Half way there with treatments and we are still progressing ok.

My wife did have some difficulties over the weekend with the sudden loss of taste meaning that we are back to soft foods for now. There are also a few blisters and a tight neck / throat but the pain is very minimal and hasn't warranted the use of medication for now.

MO & RO are both very impressed with how we are doing so far, but everyone keeps warning us the worst is yet to come and we should brace ourself for the next few weeks. Hence we are stocked heavily with all sorts of medications (Paracetemol / Oxycodone / Lignocaine / Cocaine Mouth Wash etc.)and are ready to roll when the time comes.

Another 3 weeks and we are done for (I do know the worse is 2-3 weeks post tx) and the day can't come sooner enough!

Thanks all for your words of support and advice - it sure does help reading other people's journey through treatment and it has really prepared us for this battle.
Posted By: Cheryld Re: Concerns over PET scan - 11-13-2012 02:27 AM
It will get harder... but prepare for the worst and hope for the best. Hugs!
Posted By: tina77 Re: Concerns over PET scan - 11-13-2012 03:10 AM
Hi Jay, I am sending all my best wishes to you and your wife. It is encouraging that she has been doing well for the first 3 weeks, so keep positive about the next 3.

I am awaiting my start date and following your journey, and it gives me hope!
Posted By: KP5 Re: Concerns over PET scan - 11-13-2012 03:33 AM
You guys are doing great. You are positive and ready, it can't get much better than that!!
Thanks for keeping us updated!!
Kathy
Posted By: Gabe Re: Concerns over PET scan - 11-13-2012 04:56 AM
It it great that Jen is doing so well and that you are fully prepared.
You may have come across it already but if you put "magic" in the search bar you will see plenty of references to magic mouthwash.
Thanks for the update on your journey Jay.
Love to you both!
Gabriele
Posted By: Jay Jeong Re: Concerns over PET scan - 11-13-2012 07:13 AM
Thanks all for your words of encouragement!

We are keeping upbeat and still enjoy a laugh now and then which helps. True story - the RO and us all laughed so hard the other day over a video of our lil boy. When we walked out of the appointment office, we had 15 sets of eyes looking at us like we were all mad!

We have been using the 'magic mouthwash' that was given to us by the nurses here and we have the Biotene gel / mouthwash for the dry mouth also.


The extra KG's packed on post-tx (that includes me because I had to eat with Jen!) is DEFINITELY the wisest thing we did prior to starting treatment and it would be the one word of advice I would recommend to everyone who is about to embark on this journey.

Perhaps its time for me to go on a diet as well since I feel SOOO guilty eating food in front of Jen...

God bless you all and we will make sure to keep every one of you guys in our prayers.

Jay & Jen
Posted By: Jay Jeong Re: Concerns over PET scan - 11-19-2012 07:43 AM
Hi all,

We are now 20/33 rx treatments and will be having our 5/7 chemo session on Wednesday.

Although Jen is feeling a bit more tired with the treatments, her general condition has been very good overall and she is still off any pain medication.

Eating has been a struggle not because of the swallowing but the change of taste (salty & metallic) but I am making sure she is well fed with the supplementary drinks + soft foods.

Still waiting for the pin to drop but I am not complaining with how she has progressed so far.

Ironically, I am feeling more anxious as we near the end of treatment as I don't think I can stand the thought of my wife going through this all over again in the instance of a re-occurrence...

I know this is regular process that everyone goes through and I know that even after Cancer is beaten, it never really leaves the system but I wonder how others deal with this on a day to day basis..

In the meantime, I guess we just need to focus on getting through the final weeks of treatment and the few weeks after it ends but I hope that our story provides other some comfort and relief that the side-effects do vary between person to person.

Wishing everyone all the best on this forum and our daily prayers are with you.

Jay & Jen

Posted By: davidcpa Re: Concerns over PET scan - 11-19-2012 01:17 PM
So far so good and let's hope she continues down the easy path. Re dealing, she/you will adjust and adapt to whatever comes your way.
Posted By: KP5 Re: Concerns over PET scan - 11-19-2012 01:23 PM
Hi Jay,
We are now 1 year out and I can tell you that I have just recently not thought about recurrence on a daily basis. It is the thing we all fear most, whether the patient or the caregiver.
The end of treatment is also a strange sensation because you go from the hub bub of surviving and knowing you are DOING something daily to...what? Waiting, worrying and just trying to get some normalcy back to your life.
You asked how we handled it...I can tell you that here it has been focusing on the kids and making their lives as normal as can be after last year. This past summer we tried to do lots of fun things to make up for the previous summer that they spent cooped up in the house because we were gone so much. They were awesome about it and always had a smile on their faces throughout the whole ordeal, as well as maintaining GPA'S of over 95 at the end of the school year!!!
I guess I'm just saying to focus on the great things, of which you have, and just be there for each other, which you have proven you are doing by your obvious care!!! It's the new normal and we have all either lived it or are living it. We're in it together. Thank goodness for this site!!
Blessings,
Kathy
PS...thank you for your updates! You are in our familys daily prayers too!!
Posted By: Cheryld Re: Concerns over PET scan - 11-19-2012 03:09 PM
So glad you and your wife are doing well! You will get through it. The end may be harder but she sounds like shes coping well. I didn't need my meds until the last few days and for the first few days after treatment finished. It's was by no means an easy path but I was still lucky compared to some.
For the first while everything has you going... Oh my god this isn't normal... Is this a recurrence. I off set that by checking my neck weekly and looking around my mouth weekly, if theres something genuinely concerning then i make an appointment woth my ent. Then I try to put it behind me. I have to assure myself that my surgeon was awesome, hospital great, and ive done all i can - from diet change to follow ups, to suppliments to help try and prevent a recurrence so at this point it's up to fate and destiny. I still think about it - but less so. Blessings to you.and good luck for the coming treatments.
Posted By: Jay Jeong Re: Concerns over PET scan - 11-20-2012 08:43 AM
Thanks all for the words of encouragement.

We had another session of Radiotherapy today, and a follow-up meeting with our Medical Oncologist.

One thing that has been getting slightly worse is the ringing in Jen's ear which would happen around 5 times a day in 3-4 second bursts.

The MO decided it was best to be safe than sorry and has moved Jen onto Carboplatin instead of the Cisplatin for the last 3 administrations of chemo.

I know that the compounds of the two chemo drugs are the same and studies show no difference between the two apart from the fact that Carboplatin has substantially less side effects than Cisplatin.

I am curious to know then why if this is the case, not all patients start off with Carboplatin rather than Cisplatin instead of administering it under special circumstances?

Thanks in advance for your help on this matter and look forward to your insights

Jay & Jen
Posted By: Cheryld Re: Concerns over PET scan - 11-20-2012 04:58 PM
I think it's just because it's a newer drug. And that's what most drs. move to. If one is as good as the other then so be it, do whatever causes less damage.

hugs... tell her she's getting there... ;o) slowly but surely.
Posted By: KP5 Re: Concerns over PET scan - 11-21-2012 03:07 AM
It's good they are switching her over. Kevin has permanent hearing loss now and is a bit frustrated about it. I'm not sure why they don't use the Carbo as the first choice if they are the same, except that maybe the Cistplatin has been around longer?
Kathy
Posted By: Jay Jeong Re: Concerns over PET scan - 11-21-2012 03:24 AM
Well we had our first administration of Carboplatin and I must admit - it was 10x more simpler than getting Cisplatin that's for sure!

Took us less than an hour (compared 4-5 hrs) and we were out of there! No pre / post medication required and it almost felt it was too easy...

Considering Carboplatin was approved by the FDA back in 1989, I would think it has been around long enough to be used ahead of Cisplatin in the treatment of H&N cancers if the studies show that there is no difference in the treatment outcome.

Does anyone else have any further insight as to why Carboplatin is not the preferred drug over Cisplatin in the instance it is used as adjunctive therapy to assist with Radiotherapy?

Thanks
Jay
Posted By: Jay Jeong Re: Concerns over PET scan - 11-25-2012 10:59 AM
Hi All,

Just wondering if anyone had any answers to the question above:

[quote=Jay Jeong]
Considering Carboplatin was approved by the FDA back in 1989, I would think it has been around long enough to be used ahead of Cisplatin in the treatment of H&N cancers if the studies show that there is no difference in the treatment outcome.

Does anyone else have any further insight as to why Carboplatin is not the preferred drug over Cisplatin in the instance it is used as adjunctive therapy to assist with Radiotherapy?

[/quote]

Have looked everywhere but no answer till date frown

Thanks in advance
Jay
Posted By: tina77 Re: Concerns over PET scan - 11-25-2012 02:31 PM
Jay, I was wondering about that myself, as Cisplatin would have been a no go for me as I only have one kidney.

Any one know the answer? My research suggests Carboplatin has less of the serious side effects but all the benefits, so what gives?
Posted By: Charm2017 Re: Concerns over PET scan - 11-25-2012 07:29 PM
Basically the reason that Cisplatin is used first instead of carboplatin is that most of the studies done used cisplatin so it has a track record
. Plus several studies cite a 1998 meta analysis that indicated cisplatin was better than carboplatin for head and neck tumors. Carbo vs Cis study

Cisplatin is called the �penicillin of cancer� because it is used so widely and it was the first big chemotherapy drug. Cisplatin also plays an interesting role in the history of chemistry. First synthesized in the 1800s, long before anyone thought of using it against cancer Cisplatin and carboplatin as cancer agents were discovered by accident in the 1960s when Michigan State University researchers used platinum electrodes for some experiments. The researchers though that the electrodes would be �inert,� i.e. that they would not react chemically. But when an electric current was applied, it reacted with the growth medium to form filaments that interfered with cell division. The researchers reasoned that this might be useful in cancer treatment, and the drugs were eventually patented in the 1970s.

Carboplatin's patent expired in 2002. Cisplatin's expired back in the 1996 but Bristol tried a second patent in 1995 that was overturned by a district court and then appeals court in 2002. Accordingly, there is no financial incentive for any drug company to spend the money necessary for clinical trials comparing cisplatin and carboplatin for oral cancer. Any drug manufacturer can make either one without paying royalties.
Contrast that to Erbitux which is patented hence all the clinical trials and studies being pushed and financed by the patent owner. Even the big RTOG study whose results will finally settle the Erbitux issues here, pits Erbitux against cisplatin, not carboplatin.

In two trials comparing cisplatin and carboplatin for ovarian cancer in the carboplatin package insert on Bristol Myers Squibb web site, cisplatin had a small edge in 3 year progression free survival, 23% to 19% in the NCIC trial and 14% to 8% in the SWOG trial but overall survival rates (allowing recurrences) were better for carbo in the Canadian study but worse in the Southwest study.

So at this this point, oncologists juggle the toxicity of cisplatin and the slight differences in the studies. I do not see any scenario of funding going to resolve which of two old patent expired drugs is better. Too bad for oral cancer patients though. The one bright spot is a June article in the Indian Times about a potential breakthru to have cisplatin efficacy with carboplatinum's less toxicity:
[quote]
They increased the size of Cisplatin by joining it with cholesterol. The enlarged molecules are too big to get into the body tissues and damage them but cancer cells have larger pores that let them through. In lab studies, the conjugate drug was shown to be far less toxic, but highly effective.
Sengupta and Mashelkar have set up a Delhi-based company, Invictus Oncology, to take this modified Cisplatin to the market. Invictus had licensed the technology from the non-profit Partners Healthcare, founded by the Brigham And Women's Hospital in Harvard, where the research was carried out.
Charm[/quote]
Posted By: Jay Jeong Re: Concerns over PET scan - 11-25-2012 09:06 PM
Thanks for that Charm - it is greatly appreciated and it gives me a starting point to look into this further.

Will share it here if I find anything else but it seems to me that your post covers all bases!

Kind Regards
Jay
Posted By: Jay Jeong Re: Concerns over PET scan - 11-26-2012 07:35 AM
Having a look at the publications (unfortunately, I have access to most academic journal databases due to my background..) around the clinical trial for chemoradiotherapy as a means of controlling advanced H&N cancer, it looks like the clinical trials conducted to determine the efficacy of the treatment used the '3 Big Bag Cisplatin' approach which is why most doctors recommend this.

It was reassuring to know that there was significant improvements in overall outcome for patients who had chemotherapy along with radiotherapy if the cancer was considered high risk (multiple lymph nodes, Extra-capsular spread) and that the extra strain on the body of having these toxins administered was justified..

However, it does state that the long-term side effects for this type of treatment are significantly worse hence why most patients treating earlier stages of cancer are only administered Radiotherapy.


Posted By: Jay Jeong Re: Concerns over PET scan - 11-27-2012 04:50 AM
Update:

We are now 25/33 Radiation & 6/7 chemo treatments down and on the home stretch..

Side-effects from the chemo are minimal, but the radiotherapy is now taking it's toll with Jen complaining about thick saliva and pain in her 'original' tongue + swelling of the scar tissue where she had her neck dissection but this is considered to be a lot less than what a lot of other patients go through around a similar time phase. Jen's major concern is the taste of food and she is having mad cravings for a variety of different foods but gets disheartened by the fact that she can only have soft foods for now with no taste whatsoever..

Still defying the doctors and nurses with Jen only using Paracetamol to control the pain although it looks like the lignocaine and oxycodone will be required soon as the pain level has slightly increased over the past few days.

More importantly, we have only lost approximately 2kg (4.5 pounds) since the start of treatment but this in fact more than what she was weighing post-op as we put on around 4kg between the operation & start of treatment. Doctors are still keen to put in the nasal gastric tube just in case, and will weigh her again on Friday before making a final decision.

The MO, RO and nurses are rather surprised that we have been able to cope so well till date, and despite knowing that the next few weeks to come will be the most difficult, I am grateful we have been able to hold up as well as we have been able to till date.

Hopefully, this provides others just about to embark on the journey some sort of hope and I can't wait till treatment is completed and I can confidently say that the cancer is gone!

Will keep you posted once our final treatment is completed next Friday, and thanks everyone once again for your support & responses back to the questions at hand.

Kind Regards,
Jay & Jen
Posted By: tina77 Re: Concerns over PET scan - 11-27-2012 02:32 PM
Jay, that is sooo great that Jen is doing so well, and so close to being done. I know how much you both must be looking forward to next Friday, and marking the days off on the calendar.

I hope she can get through without the NG tube. I had it in hospital, and despised it even more than the trach. It actually got removed early due to problems.

If it is a type of food, as opposed to a texture of food, she can puree in the Magic bullet. The texture sucks, but at least it's the semblance of other food. When it's not all soup or yogurt, she may get some other flavour out of it. I was sure sick of soup myself.

All my best to you both for the next few weeks!
Posted By: gmcraft Re: Concerns over PET scan - 11-27-2012 09:27 PM
It's encouraging to hear that your wife is doing so well. My husband is struggling a bit but we are getting really good care here at the hospital. I hope at some point I will be able to give a more positive report. Good for you Jay and good for Jen!
Posted By: Jay Jeong Re: Concerns over PET scan - 11-28-2012 10:52 AM
Thanks all for your words of encouragement all.

We got the magic bullet and have definitely got our money's worth over the past 3 months with it, and I am coming up with all sorts of interesting ways to pack in as many calories as in small of a drink possible. The Resource 2.0 (400 kcal in 200ml) + Manuka Honey + Peanut Butter + Whey Powder + Full cream milk into the magic bullet = one hell of a calorie punch.

The NG tube seems like it is a necessary evil at this point of time, as the pain has gotten worse and swallowing is getting difficult by the day. We will find out on Friday if we will need it inserted for the next 2-3 weeks or so but this will be determined by her weight rather than anything else. Reading on these forums, I know it will only get progressively worse even after treatment ends and despite Jen staying off it for so long (She dreads it as she had the NGT in for 10 days during op), I just want to be safe as I know the calories and fluids are most important at this point.

On another twist of events, we were told today that her White blood cell, Neutrophils, Lymphocytes & monocyte level's were too low and despite me saying we did our 6th session, it was actually cancelled this morning and we were both a bit shocked as I thought the Carboplatin would have been easier on the counts and there were no notable symptoms from the drop in counts.. We meet the RO & MO on Friday but it looks like we will have our last administration next Wednesday making it 6/7 Chemo sessions overall for Jen.

Don't know what impact this has on overall treatment effectiveness but from what I can gather on the forums, the results are pretty much the same by the look of things - is this true?

7 Radiotherapy sessions to go now and I am praying very hard indeed that things don't take a turn for the very worse over the next couple of weeks considering we have done so well thus far..

Prayers and thoughts go out to everyone else going through or has gone through treatment and I encourage everyone to keep their head up high as you are all champions.
Posted By: tina77 Re: Concerns over PET scan - 11-28-2012 01:46 PM
Jay, I know the waiting and hoping is so exhausting, especially with new baby Hunter, and I hope you have family to call on for help. I can almost "hear" how tired you guys are in your posts.

I wish there was something I could say to make it easier for you. Please know you and Jen are in my thoughts often.
Posted By: Cheryld Re: Concerns over PET scan - 11-28-2012 04:27 PM
Hey there... she's doing it great I know being there and watching her go through it is hard but she is doing very well despite how bad it seems. She will likely need the pain meds for the last week for first week after.. I did for the week after but she will hopefully start to feel better towards the end of the two week completion mark - not a big change - it will be baby steps.

You are doing great! ;o) take care and best of luck... tell her to rince frequently it will help with the mucous... or spit a lot... not very ladylike but I was a champion spitter by the end - ;o)
Posted By: Jay Jeong Re: Concerns over PET scan - 11-30-2012 07:46 AM
1 week: 5 x Radio / 1 x Chemo Session to go

Well our plan must have worked since Jen has managed to keep her weight steady, and it looks like despite the odds we have been able to avoid both the PEG as well as the Nasal Gastric Tube.

Unfortunately, the pain level has increased and she has lost her voice because of constant coughing due to dryness & itchiness in her throat. Hence, we have moved on to Endone / Cocaine Mouth wash + was given a nebulizer to help with the dry throat.

Still taking in 2000 calories+ a day (she is only a small girl - 162cm (5"3) & 51kg (112 pounds) so 2500 is a bit tough!), and this is more of a routine rather than due to hunger or satisfaction from eating.

Both the RO & MO are extremely happy with how Jen is coping with the treatment and also are very pleased with how well the inside of the mouth, throat & tongue looks at this point of time.

Praying every day that this coming Friday will be the first day of officially being 'cancer free' for many many decades to come, and I will make sure to cap this thread off with a summary of our journey thus far..

Thanks for everyone's support and words of encouragement and we will continue to have you in our prayers.

Jay & Jen (+ Hunter!)

Posted By: davidcpa Re: Concerns over PET scan - 11-30-2012 01:31 PM
Jay,

Just hold on and pray that the few weeks post Tx go as well. For the vast majority of us that's when things get ugly. I didn't get my nasal tube until my 2nd week POST Tx. Good news is that when she finally walks out of that tunnel, it's a slow but rewarding return to her life post cancer.
Posted By: tina77 Re: Concerns over PET scan - 11-30-2012 01:32 PM
Jay, that is such good news. You're on the final countdown! She is such a trooper to get through this so well. Looking forward to next week for you!
Posted By: ChristineB Re: Concerns over PET scan - 11-30-2012 01:37 PM
David is right, now is when the roughest part of this whole thing really kicks in. The last week is the hardest and first 2 or 3 afterwards. Keep pushing that nutrition and hydration. That is playing a huge role in how well she is doing. If she isnt able to take in enough water, ask for hydration in the chemo lab. You would need a prescription. After getting hydrated she will feel much better. Keep the pain under control, it wont help for her to be hurting. Ask about upping the pain meds to get her thru the next 3 weeks.

Best wishes!!!
Posted By: Cheryld Re: Concerns over PET scan - 11-30-2012 04:12 PM
You'll get there - it will be harder but she sounds tough,.. She'll get there
Posted By: Jay Jeong Re: Concerns over PET scan - 12-05-2012 05:50 AM
Final Chemo session was completed today (4x Cisplatin, 2x Carboplatin) and we now have just 2 rad sessions to go..

Finally inserted the Nasal Gastric Tube on Monday this week voluntarily as Jen's throat got very bad over the weekend and could not swallow anything including water.

Although we have lost no weight since treatment begun over 6 weeks ago, we thought it might be the safe bet to get it inserted as we knew eating would become a struggle over the next few weeks.

Currently, we are getting down around 5 x Ensure 2.0 per day which equates to approximately 2300 kcal through the tube, and it has made things a whole lot easier for her.

Using around 60mg of Oxicodone per day + Cocaine Mouthwash for pain relief, and we were just prescribed MS Contin just in case things get difficult over night as it lasts for 12 hours.

Only 2 more days to go until treatment is complete, and I pray that it's the last time we EVER step foot into the radiotherapy or chemotherapy room of ANY hospital.

Not to say that we won't miss the doctors, nurses and staff at all the hospitals as they have been incredible, but I am sure we will get to see them on a frequent basis as we get regular check ups post-treatment.

In all honesty, the advice that I have gathered from OCF and the stories you have all shared with us has helped us so much through this difficult journey, and has prepared us so well for what was expected.

As promised, I will try and put together one final post once treatment is over and have had time to settle down which may hopefully help others lurking these forums for some information around what to expect during treatment.

Kind Regards
Jay & Jen (+Hunter!)
Posted By: davidcpa Re: Concerns over PET scan - 12-05-2012 02:00 PM
Glad you got the nasal tube but remember she must continue to swallow every day. 5 Cans of Boost VHC would yield appx 2800 cals for the same effort. Hang in there for a couple more weeks and things should start to migrate towards the brighter side.
Posted By: Jay Jeong Re: Concerns over PET scan - 12-07-2012 10:38 AM
It all started almost 4 months ago when my wife complained about a very sore tongue to her paediatrician during her monthly visit due to her pregnancy.

Although he didn't think much of it at the time due to my wife's otherwise excellent health and no risk factors involved, he wanted to be safe and sent us to a specialist for them to have a look at it.

The specialist also didn't think much of it, stating that it was more than likely it was related to the fatigue and stress caused on the body due to the pregnancy but wanted to be certain so she conducted a biopsy on the spot. Little did we know that these precautionary steps would lead to my wife being diagnosed with tongue cancer a few days later which would change our lives forever.

We knew something was up when we got the call from the hospital requesting we come in urgently to see the doctors, and when the doctors uttered the word �Squamous Cell Carcinoma�, we thought it was a medical condition but had no idea it was a type of cancer.

They reassured us that by the look of things, we had gotten it early and the actual size of the tumour was very small. However, after multiple tests which included a CT, MRI, multiple blood tests, a fine needle aspiration and physical examination by a whole team of doctors � the doctors concluded that it was a Stage IV cancer � T4aN2bM0.

Despite the tumor size being approximately 25mm in maximum dimension, it was deeply invasive to the skeletal muscle (15mm) of the tongue resulting in the T4a categorization, and N2b as the FNA concluded that the cancer had indeed metastasized to her lymph nodes. The pathology report that followed the surgery did indeed back this up, although we did get further bad news that one of the nodes was displaying extra capsular spread, and that there was also a tumour deposit around 17mm in dimension in one of her other nodes.

This meant that the most aggressive form of treatment was required to allow my wife to have the best chance at not only beating this cancer, but preventing it reoccurring due to its aggressive nature and they suggested that we take the following treatment plan over the next few months:

� 4th of August � Diagnosed
� 3rd of September - Induced Birth @ 36 weeks
� 11th of September � Surgery: Partial Glossectomy + Free Flap Incision + Partial Neck Dissection (Left Level 1-5)
� 23rd of October: Start of 33 x IMRT Sessions + 7 x Chemotherapy Sessions over 6.5 weeks

Having done extensive research and asking for a second opinion from other hospitals, we decided to stick with this plan and spent the following few weeks making sure that we would have everything prepared in advance prior to this starting.

First came the delivery of our baby boy � Hunter which occurred with no complications and more importantly, no need for a c-section which was expected in my wife�s situation. Next came the 12 hour surgery despite only being 6 days out from being discharged from the Women�s hospital, and the 10 gruelling days that followed in the recovery ward. The doctors told us that they had got all of the cancer (all margins 4mm+ clear), albeit one part of the tongue only having a 1mm margin which was intentionally done as it would have resulted in the entire tongue being removed due to the location. Having a few weeks to see my wife recover very quickly, we were again put on the back foot again once treatment started and the gains we made with her speech and eating (which were at around 90% normal levels) have all been rolled back to a state as it was pre-surgery.

However, here we are with all treatments completed as of today. Our last radiotherapy session was today, and we have now gone through all that modern medicine has been able to provide in regards to beating this dreadful thing called cancer. Despite the side-affects from the treatment still taking its toll (and I know that there will be a few more weeks of this), we have come out in relatively good spirits and in otherwise good health.

Although it will take a few months to surely know that my wife is in remission, I have decided to call today our first day of �cancer free� since being diagnosed, and will focus on the long road ahead to recovery.

We thank this board and its member for the wealth of knowledge shared throughout our journey, and I can honestly say it has helped our family an incredible amount. We hope that our story and our journey has helped others who are looking to embark, or who have already embarked on their quest to be healthy again and our prayers will always be with those who share this unwanted fate.

On a final note � one thing that has changed since we started this journey is that my definition of a miracle has somewhat changed. A miracle is not some dream that happens to those who are only fortunate or lucky. A miracle is when you are able to live normally in abnormal circumstances � something that all of us here at OCF do on a day to day basis.

Thus, I hope that everyone enjoys many more miraculous years to follow, and wish you all the very best.

God bless.
Jenny, Jay & Hunter
Posted By: davidcpa Re: Concerns over PET scan - 12-07-2012 01:20 PM
Congrats to the both of you!!!!!!!
Posted By: Anne-Marie Re: Concerns over PET scan - 12-07-2012 01:50 PM
Jay - Thank you so much for sharing this wonderful journey of survival in such extreme circumstances. I'm sure your experiences will be a source of help and courage and hope for all who come here. Congratulations to Jenny on being cancer-free!! May the remaining weeks of recovery go quickly and be problem-free. Very best wishes to you and Jenny and Beautiful Baby Hunter!
Posted By: KP5 Re: Concerns over PET scan - 12-07-2012 02:51 PM
This sent chills up my spine. Thank you for sharing with us. It has been amazing to listen to your updates and hear the teamwork in your marriage. You are very Blessed indeed and can now look forward to life and enjoy the celebration of Jesus' birth!!!
Kathy
Posted By: tina77 Re: Concerns over PET scan - 12-07-2012 02:54 PM
Jay,

I am so happy for you both (well really all 3). I'm not much of a crier, but your post brought me to tears. I feel somehow a kindred spirit in Jen, and know that she will bounce back from her treatment in record time, for you and Hunter.

All my best, and of course, I will be waiting to hear good news.
Posted By: ChristineB Re: Concerns over PET scan - 12-07-2012 07:17 PM
Congrats to Jenny for finishing her treatments!!! She will be feeling a little better in a couple weeks. Best wishes with recovery!

Posted By: gmcraft Re: Concerns over PET scan - 12-07-2012 08:31 PM
Congratulations to you, Jenny and little Hunter, heroes all!!!
Posted By: Gabe Re: Concerns over PET scan - 12-07-2012 10:18 PM
Firstly I would like to congratulate you both on reaching the end of Jen�s treatments.
You have written a wonderful update summarising your experiences from start to the finish.
Keeping it mostly all on your original thread makes it so easy for others to follow and learn from.
I for one have been reading all the updates you have posted on your journey.
You obviously have a special close relationship and the love comes through so clearly with every post over these last 4 months.
May Jen�s recovery be speedy and problem free so that the 3 of you can enjoy your new normal lives.
Love
Gabriele
Posted By: Jay Jeong Re: Concerns over PET scan - 12-14-2012 05:52 AM
Thanks everyone for their well wishes & sorry it's taken a bit of time to post. Cannot believe it has been already 1 week post-tx and this time last week was the very last day of treatment.

Unfortunately, the past week hit us hard (as expected) with the thick mucous playing it's part along with a very sore throat & neck which means we are still using the Nasal Gastric tube for all of Jen's nutritions. Furthermore, the small c started to do it's bit as well and all this has resulted in fatigue, nausea and overall feeling pretty bad due to the lack of sleep.

Medication wise, still on 30mg MS Contin + Paracetamol for breakthrough pain and using the magic mouthwash + baking powder to counter the thick saliva & sore throat. Have taken out the Oxycontin due to the problems we were facing with small 'c' and have added some medication to counter this also.

However, it looks like the worst is over and hopefully things will start turning around over the next week or so. Having the baby around full time is a huge boost plus we have just had my parents arrive for 6 weeks during the festive season to help us out in and around the house.

First follow-up meetings with our ENT doctor & RO next week and very eager to see what they have to say. Praying hard it will be mostly positive news and I will write another update next week for you all.

God bless and I hope everyone has a wonderful lead in to Christmas & the New Year.

Kindest Regards
Jay, Jen & Hunter
Posted By: Anne-Marie Re: Concerns over PET scan - 12-14-2012 08:24 AM
Sounds like you are taking care of things and it's great to see the positive attitude you have in getting through the most difficult part of Rad Tx. How wonderful that your parents are with you to help around the house, and to share with you all the joys of Baby Hunter! Praying for more good news next week.
Posted By: tina77 Re: Concerns over PET scan - 12-14-2012 01:55 PM
Jay,

I have full faith that Christmas will find Jen feeling much much better and able to enjoy Hunter's first Christmas. Just think, in 2 weeks the worst is all over and evey day will be so much better.

Take care, and keep writing.
Posted By: Jay Jeong Re: Concerns over PET scan - 12-20-2012 07:25 AM
Another week gone and we are now coming up to two weeks post tx.

Since my last post, we have now recovered incredibly well with Jen now back onto taking nutrition & fluids orally (100%) and pain levels have subsided to a more manageable level.

The small 'c' has subsided also and the radiation burns are now all but gone (it has disappeared 'miraculously') since around 2-3 days ago when it was at it's worse.

Medication wise, currently taking 20mg MS Contin every 12 hours and will slowly be taking this off the list as well meaning we will hopefully be medication free by Christmas.

Had our first meeting with our ENT specialist on Wednesday, and everyone is a bit in awe as to how Jen was able to manage her weight and keep her 'glow' despite going through maximum treatment,surgery & labour! She said that Jen was doing amazing compared to all of her other patients, but was cautious to say we were fully out of the woods yet and will have to give it a good 3 months before we were able to run a proper scan.

We are now on 2 month check-ups with the ENT docs, and we have our first follow-up meeting with the RO post-tx tomorrow morning and hopefully that meeting goes equally as well and we get to remove the Nasal Gastric Tube (hooray!) to boot smile

It just proves that my wife is much more stronger than I am - and she is the one who quietly runs our household smile

Although progress is slow and we are not 100% yet - we can slowly see the light at the end of the tunnel and hopefully Jen will get some of her taste back and move onto solid foods and fully recover with the burns & pain over the next few weeks.

Will keep you all posted on how we do over the festive season, and I wish you all the pleasures & joys that Christmas has to offer, and may 2013 be a year full of happiness and hope.

Jay, Jen & Hunter
Posted By: davidcpa Re: Concerns over PET scan - 12-20-2012 01:48 PM
Sounds great and it sounds like she is walking out of that tunnel as we post. Don't fret if she has some bad days during the early weeks of her recovery. We all did. Even if she does they will eventually disappear. Do be prepared for a possible 2 year recovery period. Don't get concerned if that happens as that's pretty normal. Taste and saliva SLOWLY return. For me it did take all of 2 years before I saw my last improvement.
Posted By: tina77 Re: Concerns over PET scan - 12-20-2012 02:29 PM
Jay, that is so great to hear! I knew she would, but it is always gratifying to be right, lol!

Tell Jen she's my hero,
Posted By: gmcraft Re: Concerns over PET scan - 12-20-2012 05:39 PM
Such good news and just before Christmas and New Year's too. Very happy for you guys.
Posted By: tamvonk Re: Concerns over PET scan - 12-20-2012 08:26 PM

That's great news.
I wish you both a fabulous festive season with your Baby Hunter and Family.
Tammy
Posted By: KP5 Re: Concerns over PET scan - 12-20-2012 09:26 PM
Hi Jay,
This post makes me smile!!! I love when "miracles" happen!! The way she has gotten through this is a testament to your faith I believe. So glad to hear she's getting better and better. Enjoy these next few weeks.
Kathy
Posted By: tina77 Re: Concerns over PET scan - 12-26-2012 04:18 AM
Jay, I hope you, Jen and Hunter are having a peaceful and happy day!
Posted By: Jay Jeong Re: Concerns over PET scan - 12-27-2012 11:40 PM
Hi all,

Firstly - Merry Christmas and I hope everyone had a chance to take a break from the big C and enjoyed the festive season with loved ones.

Jen recovered very well over the past week, and her RO was very pleased with how she was progressing and we took out the Nasal Gastric Tube last Friday (Jen had actually gained around 1kg!) meaning that it was only in for around 8 days total.

This means, she is now taking all of her medication & food orally and the pain in her throat has all but subsided. Unfortunately, taste has yet to come back but I am sure this will come back slowly but surely reading what others have posted on this forum.

The radiation burns on her neck have all but disappeared, and her 'tan' is now coming back to her usual skin tone and colour. Also, the swelling around her neck caused by the scar tissue has become much better as well and she was confident enough to go out for a BBQ with friends for the first time since treatment last Saturday.

Medication wise, we are on around 10mg of MS Contin once a day, and taking paracetamol every 4-5 hours just to be safe. She is feeling a 'tingling' sensation in her tongue and I suspect this is because of her body trying to recover from all the damage done in that area, and new tissue & cells forming which I can visually see happening on a day to day basis.

As you can tell from above - the physical recovery has well and truly started and it is incredible how the human body is designed to recover so rapidly.

Unfortunately, the mental and spiritual aspects are a different story, and I can now relate to everyone's view point that Cancer will be around for a very long time, even after the physical symptoms are all but gone. I guess this will be the next challenge that we must overcome, and I look forward to 2013 (good or bad) and all God has in store for our family.

With all that has gone on this year, every Christmas as a family will now be a time to celebrate and be grateful for, and I hope there are many many MANY Christmas's to come.

God bless you all and I hope that despite all the challenges, sufferings and losses in 2012, I am sure that this experience has made all of us and all those affected stronger, more resilient people who are able to appreciate life and all it's wonders in a different shade of light come 2013

Seasons Greetings & Happy New Year!
Jen, Jay & Hunter
Posted By: KP5 Re: Concerns over PET scan - 12-28-2012 04:44 PM
Hi Jay,
Yes, the new normal has set in, but it does get better the further out you get. The first few months are the hardest. I believe it's because while in tx we are DOING something to get rid of it, but after that is done, there is this feeling of...hmmm...now what. I know that our faith is supposed to keep us going, and in the long run it does, but it is a struggle in the beginning. I will continue to pray for peace over you guys!!
Thanks for your update. Wishing your family a Happy New Year too!!
Kathy
Posted By: Jay Jeong Re: Concerns over PET scan - 01-07-2013 03:00 PM
Belated Happy New Years to all the members here on OCF!

Another week gone and we are over 4 weeks post treatment and things are slowly getting better and better which is good.

Jen has now regained certain tastes back although not to the full extent (about 15% taste in specific foods) and is trying different stuff out on a day to day basis.

It has also been around 10 days since she has stopped all medication and boy was that another journey getting off the morphine! In saying that, managing the medication and getting off it so quickly was probably one of the best things along with the nutrition aspect we did, as she has now got her mental 'vibe' back and is thinking a lot more clearly compared to when she was on the pain meds.

We have our final meeting with our RO this coming Friday, then 2 month follow ups with our ENT docs thereafter. First PET / CT Scan was also scheduled in for the 19th of March so plenty more hospital visits to come...

I am so proud of Jen on how she has coped and recovered from all that has happened over the past 6 months, and I am praying hard that the effort put in does not go to waste..

It looks like it is going to be one interesting 2013, and I hope this time next year I am still able to write this in such a positive spin as I have done today..


Posted By: Cheryld Re: Concerns over PET scan - 01-07-2013 04:44 PM
Awesome! So glad she is doing so well!
Posted By: gmcraft Re: Concerns over PET scan - 01-07-2013 06:43 PM
Jay, I have been following your posts since my husband's diagnosis. Your journey has given me a great deal of encouragement and hope when things did not go well for us and we got hit by all kinds of curve balls. You and Jen both should be very proud of yourselves. Best of luck in 2013!
Posted By: Jay Jeong Re: Concerns over PET scan - 01-11-2013 12:15 PM
Well, another week down and we are now 5 weeks post tx.

I really don't know whether or not I should continue to write in this post, as we are technical in after treatment and don't know how relevant the information I am posting here has on others who are currently going through treatment. Just want to keep everything in one place so that others who might want to read through can see the full story as time has past but if need be, I am happy to create a new thread if required.

Today, we had our meeting with our RO & Dietician at our Cancer Treatment hospital for the very last time as Jen was discharged due to the fact that the RO believed that her recovery from her treatment was well on track, and that ongoing check-ups should now go back to our ENT doctors moving forward.

Our first PET / CT scan was also scheduled for the 19th of March which is a date that has started to bring a little bit of anxiety to both myself & Jen. The fact that we know that the cancer was fairly advanced with negative prognosis factors such as ECS really does play with your mind and I guess the countdown starts from now until that date to know for sure we have beaten this thing through and through.

Jen continues to search for her taste buds but is getting a lot more adventurous with her food intake trying anything and everything just to see if there is any taste. Currently, we are able to taste lettuce, milk, cheese, eggs, chicken, certain breads, fish all at about 15% of the normal level but I am sure that list and percentage will increase as the ulcers on her original tongue subside and heals. To everyone's amazement, Jen is not suffering from severe dry mouth, and her saliva function is almost back to normal. Inside the mouth, there is a small 'lump' which is scar tissue forming along with water 'blisters' that come and go, but none of it seems to be of too much concern as per the doctors visual scope that was done today.

It felt good knowing that there was one less hospital to visit, but at the same time there was this sense of void that came with knowing that there was one less set of eyes to watch over Jen from now onwards. I really don't know why it scares me to think that we are slowly getting back to a normal routine as I would have thought it would have made me a lot more happier.. Perhaps overcoming this anxiety & fear is the next challenge in this fight against Cancer and I am curious to know how others have dealt & continue to deal with this...

I know that faith has got us this far and I am grateful for it but we are all only human and as I have more time to think about what we have gone through over the past 5 months, the more questions I come up with that linger in my head...

Jen,Jay & Hunter

Posted By: Anne-Marie Re: Concerns over PET scan - 01-11-2013 06:29 PM
It really does sound like Jen is doing very well. Getting back to normal and to a new routine can be scary. Any change in life brings stress - even happy changes. I think lots of us have had that "what now" feeling. When my son completed his Rad Tx, I felt a certain insecurity in knowing there would not be the regular doctor visits to check on his progress from day to day. Getting used to a new routine and keeping busy helps and soon the changes bring the comfort of the new routine and of knowing things are ok.
Posted By: Charm2017 Re: Concerns over PET scan - 01-11-2013 08:01 PM
Jsy

It's perfectly normal to worry about the Petscan in March especially since petscans have such a high rate of false positives. I'm pretty nervous about my upcoming 3 month MRI myself especially since I'm pretty much out of options if this is bad. Still, focus on today, Celebrate each little recovery of Jen's. If worrying could stop a recurrence, I would never had had even one, the way my wife worried and still worries.
Easy to say, but hard to do.
You mention your faith, and that's a good source of strength for many posters. I still get tears hearing the song Hallelujah - with its verses dealing with keeping the faith in the strength of adversity and sorrow like we all experience
[quote]It's not a cry you can hear at night
it's not somebody who has seen the light:
it's a cold and it's a broken Hallelujah...
there's a blaze of light in every word
It doesn't matter which you heard
The holy or the broken Hallelujah...
And even though it all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah
[/quote]
So even though so many many things are wrong about what you and Jen have endured, there is still a lot of good news and new life with your child. If you can focus on that, it does help.
I just realized I'm on my 13th scan this Sunday and while I do try to practice what I preach, it's hard. Last but not least, I think that the anticipation and worry over scans is much worse for caregivers like yourself than for patients like myself. At least that's true in my household.
Keep the Faith
Charm
Posted By: KP5 Re: Concerns over PET scan - 01-12-2013 01:00 AM
Hi Jay,
I don't know what to say other than you really do have to take it one day at a time. It does get easier, but it takes awhile.
Charm is right about the PET. I'm sure you're aware of the strong possibility of false positives. I hope you are anyway. Our first PET came back with a hot spot freaking everyone out, but after an MRI it turned out to be only inflammation. A few days of major stress. Our next PET was clear though. We are due next month again, but are going to request an MRI as they are more accurate the first time around.
Hang in there. Love the song Charm quoted. Stay focused on God. Play Praise music daily. Find your favorite scriptures and jot them down and put them on the bathroom mirror and anywhere else you look several times a day. Maybe by Hunter's changing table. Cover your hearts and minds with Faith!!
Blessings,
Kathy
Posted By: Jay Jeong Re: Concerns over PET scan - 01-17-2013 09:15 AM
Thanks everyone for the words of encouragement & honest advice. Charm - I think both you and I agree faith is what pulls us together and I thank you for sharing the lyrics to that song smile

Well, another week has past and I cannot believe it is now 6 weeks post-tx. Both Jen & myself have now started to get back into our normal routines, with me starting to go back to the office and Jen looking after bubs at home.

I had a client meeting on Tuesday at work with a lady whom I just started working with, and was surprised to find out that she had been fighting cancer for the past 6 years, and had recently just completed another round of chemo & surgery due to her cancer now spreading rapidly through her lymphatic system (it was her third reoccurence). It was a bit of a shock when she told me that the doctors had told her she probably had around 2 years left to live, as she looked so upbeat, energetic & healthy! Also found out that she was the patient advocate at the cancer hospital that my wife was treated at, and we actually shared the same MO. It just goes to show that cancer is a disease that affects a lot more people that what you assume when your my age, and that a normal life is possible despite the adversities.

Jen has had another week of remarkable recovery, with the majority of the pain in her tongue & neck all but gone, and she can now taste a more variety of food with taste getting better as well. Still can't taste sweet flavours yet, but I am sure it will return over time with the remaining missing taste buds over time.

She is now back to experiencing the physical symptoms caused by the surgery (stiff shoulder & sensitive neck where the neck dissection occurred) but I keep telling her this is a good sign as it means that the real concerns in and around her tongue have recovered well enough for smaller symptoms to go noticed!

Emotionally & spiritually, we are starting to cope with the new 'normal' and getting back into a routine with work, life & taking care of Hunter has definitely helped. I hope that this progresses to get better as the day goes, and I long the day where cancer is a far distant memory that serves only the purpose of reminding us how precious health & life is, and should be thankful for what we currently have.

Jen, Jay & Hunter
Posted By: Anne-Marie Re: Concerns over PET scan - 01-17-2013 11:05 AM
Jay - so glad to see such an encouraging update! The taste for sweetness did come later for my son. For him it happened when he bit into a gourmet jelly bean and we really celebrated that! Maybe you could get Jen a nice bunch of colorful and different flavored gourmet jelly beans for her to try and check on the sweetness taste. smile
Posted By: Jay Jeong Re: Concerns over PET scan - 01-25-2013 02:33 PM
Another week gone (7 weeks post tx) and things are progressing along fine. Not really much to report apart from the fact that we are starting to slowly get back into our normal routines.

I think we have been very fortunate that Jen has been able to recover so quickly from her Tx, and it is quite amazing how she has been able to regain a lot of her speech, swallowing & movement functions back so quickly.

Taste issues are still around the same (15%) although we are starting to get much more adventurous with our food choice (we tried Pizza yesterday!). Still no sweet taste but I will definitely try the Jelly Beans as per your recommendation Anne-Marie sometime during next week!

Still over a month away from our next appointment with our ENT doctor, and over 6 weeks away from our first scheduled PET/CT scans. Quite a strange feeling not seeing a medical professional for such a prolonged period of time, after seeing someone pretty much every day for the past 6 months.

I know they are only a phone call away for us to schedule something with them, but the very fact that we are on our own to watch over the recovery is quite a big responsibility if you think about it.. In saying that, I hope Jen's recovery continue to progress as is, and there is no need for us to book in any urgent meetings at the hospital between now and then!

Will keep all of you wonderful folks on this forum in our prayers, and I hope that these updates serve some sort of purpose to those reading our journey.

Jen, Jay & Hunter.
Posted By: Jay Jeong Re: Concerns over PET scan - 02-02-2013 01:03 AM
Week 8 post-tx and a few of the 'side affects' from the treatment have started to appear.

Jen has a little 'lump' that has appeared on her chin which is on the opposite side to where the cancer was. It doesn't seem like much but as with most on here - your mind plays tricks with you and tends to wander off by its own sometimes which doesn't help.

Hair loss in the back of the neck area continues on despite being 8 weeks out from treatment, and considering she was administered carboplatin - it is a bit baffling as to why this continues to happen.

Sore neck & shoulders are also an issue and I don't think it is helped by the fact that she has to take care of a 10kg baby during the day and has to pick him up and put him down all day long!

On a more positive note, she definitely has a lot more energy and it was encouraging to hear from her that she felt 'hungry' for the first time after treatment despite taste levels remaining at 15-20%. Also, her tongue movement with her new flap has improved so much which as a result means she is able to speak and eat a whole lot better now - I would say almost at 90% levels pre-tx.

Follow-up bookings at the hospital were also made for the end of the month with the dental oncologist, speech therapist & dietician for this month along with our ENT doctor which hopefully gives us a chance to go through a few of the post-tx symptoms outlined above, but I would love to know if anyone else has had similar issues and it would be great!

Thank you all as always and God bless.

Jen, Jay & Hunter.
Posted By: Karen Rose Re: Concerns over PET scan - 02-02-2013 02:17 AM

Jay,

Good to hear Jen is progressing well. If the �small lump� changes or increases in size I recommend you arrange to meet your wife�s ENT earlier and have them check it out sooner rather than later.

Karen
Posted By: PaulB Re: Concerns over PET scan - 02-02-2013 02:19 AM
I had the lump under my chin after rads, and then after the neck diseection. It's an accumulation of lymphatic fluid drainage due to the damage or removal of the nodes in the neck, and will probably subside, but let the doctor check it. I called it my turkey neck. Some have manual lymph drainage massage by a therapist trained in this, which name escapes my mind..chemo fog. The massage has to be done in a certain way, direction, pressure, and depends on the area of the face and neck, so just massaging it may not be helpful.

A radical neck dissection, as you probably know, invloves the removal of the neck muscle, vein, and nerve, in addidtion to lymph nodes in level II-V, and some do have neck, and shoulder weakness, pain and probably the baby weight is added stress. I'm gong to PT again to help mine, and doing stretching exercises, which I'm sore for a few days after, but seems to help.

The hair loss on the nape of the neck, hairline, is from radiation too, which continues to work 6 weeks post treatment. I didn't have Carboplatin, but it's close relative, Cisplatin, which also causes hair loss to some extent.

I hope this helps.
Posted By: Jay Jeong Re: Concerns over PET scan - 02-02-2013 03:02 AM
Thanks for your replies - I suspect that the lump under the chin is due to lymphodema as per your comments Paul but I will keep a close eye on it over the next few weeks.

Karen: We are also in Melbourne and have our appoint scheduled at the Royal Melbourne Hospital this month and will definitely reschedule if we see any changes.

As for the hair loss - glad to know Jen is not the only one and I agree with you Paul that the shoulder & neck pain is due to the neck dissection & carrying around a pretty big boy around!

Again - wonderful to hear your responses and it does put my mind at ease knowing that these symptoms are pretty common post-tx.

Jay
Posted By: lola7172 Re: Concerns over PET scan - 02-03-2013 03:50 AM
Jay- thanks for posting this. Many stories in this forum give me hope and strength. As I go for round 2 of my battle, info in this forum has been so helpful.

Many blessings to your family and congrats on everything good with your new normal.
~ Lola
Posted By: tina77 Re: Concerns over PET scan - 02-03-2013 04:13 PM
Jay,

Yep, the pain popped up over the last couple of weeks for me. At first I thought I had been over-enthusiastic about my PT exercises, but it has progressed over the last 10 days, until it finally occurred to me that I can feel more of my upper chest and chin, so I expect it is the nerves returning and now letting me know the pain of the surgery.

Who knew the numbness was a blessing, lol. Stretching helps, and I have been watching my posture, which the PT will likely tell Jen as well. We have a tendency to "hunch" to compensate for the reduced strength/mobility. The best stretch is to roll up a towel, put it between the shoulder blades, lie down and stretch the arms to the side.

It's the standing joke in my office that I look like I'm trying to look more busty, by sticking out my chest all the time... Personally, I think I look like like a chicken...

All my best to you, Jen and Hunter
Posted By: Cheryld Re: Concerns over PET scan - 02-05-2013 01:20 PM
Jay make the appointment early and have the lump checked out it could be drainage fluid and what not, a cooked salivary gland, or even just a lump from where the drain was placed but best to have it checked out ASAP.
Is the lump firm?

Also it's good to get to know what's normal for her neck.

Take care

Posted By: Jay Jeong Re: Concerns over PET scan - 02-12-2013 11:59 AM
Took everyone's advice and rescheduled our meeting with our ENT doctor which we had today.
The waiting is always the hard part (2 hour + wait..) but the check-up was thorough and well worth the wait.

Also got a copy of our entire collection of scans on CD and also the entire history of Jen's records from initial biopsy to details around the IMRT treatment which ended a few weeks back which was a pretty interesting read! It is amazing how detailed their comments & notes actually are, and I was very impressed with how everything was recorded - and I mean EVERYTHING.

Here are a few comments based on our discussion with our ENT doctor today which hopefully helps others out who may experience similar symptoms post-tx:

  • Jen was experiencing 'tingling' in her arms & hands on and off which they told us it was most likely Peripheral neuropathy which is caused by the cisplatin. Unfortunately, this is probably a permanent ongoing side effect and there is really no treatment for this.
  • Swelling and stiffness around her jaw & neck was most likely due to the lymphodema and hard scar tissue forming where the neck dissection took place. Doctor recommended massage to drain fluids so will find someone who can help asap.
  • Taste will improve over time as taste buds start to reform (usually around 3 months post-tx) but will never reach 100% as a big portion of her tongue was removed.
  • Tongue mobility & speech was excellent considering the extent of her surgery and ongoing therapy should help improve this function.
  • Post-tx scans will be determined based on the next follow-up check up on the 26th of February. If required, the initial PET/CT scan on the 19th of March may be brought forward with an MRI scan as well
  • Blood tests have been ordered to see if there are any issues with Jen's immune system & also more importantly, her thyroid functions.
  • Body aches & pains were probably due to Jen's menopause starting again (hooray!) & taking care of a 6 month old baby full time rather than anything else.
  • Physiotherapy was arranged to regain some strength back in her shoulders & neck and will commence shortly.
  • Follow-up meeting with the dental oncologist was booked for the 28th of February to see how Jen's teeth & gums are doing post-rad.
  • ENT doctor was adamant weight loss due to lack of nutrition was a recovering patients worst enemy and told Jen on multiple occasions to keep up with her diet.

An exhausting day but was well worth getting some clarity around what was in store for Jen to manage on-going issues. I guess we are now in the next phase of recovery.

Will let you all know how we go after our next meeting with our ENT & DO but until then, God bless and our thoughts are with you all.

Jen, Jay & Hunter
Posted By: ChristineB Re: Concerns over PET scan - 02-12-2013 01:10 PM
Im so glad you went in to see the doc! Im sure both of you are very relieved! When in doubt check it out is what I always go by. Keep up the vigilant good work and never be afraid to see the doc about things if you are concerned.

They are right about the good nutrition too! After I finished rads, 4 or 5 days a week I would take in 7000+ calories with drinking my chocolate peanut butter milkshakes. I would drink one very single day but some days I would drink 2 or 3 of them, each one had at least 2500 calories. I was doing this for about 4 or 5 months and never realized how many calories I was taking in until one day I sat down and figured it out. I was shocked! Since I was still in recovery mode I never gained an ounce even with that type of caloric intake. Bottom line is keep encouraging her to push the nigh calories and nutrition for at least the first year after finishing rads. Her body has been thru the war and needs extra calories and protein to heal. She is also burning up lots of calories being mommy to Hunter. Any mother of an active baby will get worn out from time to time, especially a mom who just battled cancer and its brutal treatments.

You are a great caregiver! Right on the ball, very observant. Jen also has a great medical team who seem to be very thorough and on top of things.

Best wishes with Jen's continuing recovery!
Posted By: Cheryld Re: Concerns over PET scan - 02-12-2013 05:14 PM
So glad she's doing so well!
Posted By: Jay Jeong Re: Concerns over PET scan - 02-27-2013 01:13 PM
Hi all,

Can't believe it has been more than 2 weeks since the last post, and I thought it might be worth putting together a quick update on progress made with Jen.

  • A lot of muscle was lost in the left side of the shoulder & neck as it was not used for almost 6 months due to the neck dissection. Started Physiotherapy twice a week which includes 2 hours worth of hydrotherapy in the pool to ensure that she regains strength in this area.
  • Met with our dental oncologist who gave us the all clear with Jen's teeth & gums. There was a front tooth with signs of some issues due to the radiotherapy, but he didn't think much of it as there were no particular symptoms and advised us to get a root canal if it does cause any problems in the future.
  • Had blood tests conducted last Friday and waiting to hear back from the ENT doctor about the results. Slightly concerned that Jen has had specific symptoms which seems to point towards hyperthyrodism but we will have to wait to see if this is the case.

Overall, taste is starting to get better as well as speech function which is great to see. Jen also seems to have a lot more energy and is now pain free which is great to see.

Swelling around her neck has subsided and scars around her neck area have also improved drastically. We still are waiting anxiously for the PET / CT scan scheduled for the 19th of March and we can't wait until we are given a clean bill of health so we can breath easy for a while.

On a separate note, we had our little bub's 6 month vaccination shots and was astonished to hear that he is currently over 9.8kg & is over 74cm tall which means he is actually outside the graph line for the 98th percentile for both weight & height. Considering he was born premature, it is amazing to see him thrive and we have been truly blessed to have such a well tempered, healthy child in our lives!

Will post another update in a few weeks time once the scans are done but in the meantime, I wish all those in treatment all the very best & I hope our story does provide some glimmer of hope that there is indeed light at the end of the tunnel.

Kindest Regards
Jay, Jen & Hunter.
Posted By: KP5 Re: Concerns over PET scan - 02-27-2013 07:43 PM
Thanks for the update. Love hearing from you.
Yay for Baby Hunter!! You both are awesome parents. Even with everything that has been going on he is thriving and exceeding all goals!! Congrats!
Kathy
Posted By: Cheryld Re: Concerns over PET scan - 03-01-2013 02:47 PM
Yeah!, So glad you all are doing well.
Posted By: gmcraft Re: Concerns over PET scan - 03-01-2013 07:47 PM
Hunter sure is a little giant -- so happy for you. Wishing you and Jen all the very best and continued improvement.
Posted By: Jay Jeong Re: Concerns over PET scan - 03-08-2013 01:58 AM
Hi all,

Can't believe we are now past 13 weeks post-tx & I thank everyone for their well wishes.

Jen is doing very well and her taste has come back quite considerably over the past week or so and she can now taste 'sweets' for the first time in almost 4 months.

Energy levels are up to the point where she is well enough to take care of Hunter full time while I am back at the office, and she has also had huge improvements in her speech & eating functions once more which is great to see.

We had a huge scare last week when her blood tests for her thyroid as per my last update showed abnormally high levels and the doctors wanted to see us urgently.

However,the endocrinologist had a look at Jen and didn't think much of it and suspected it be due to her giving birth rather than the radiotherapy which was quite a surprise to hear.

He ordered another blood test on the spot and the results came through yesterday and his observation was correct - the thyroid levels had dropped by 3 fold and is now almost back to normal levels. Just to be sure, he has ordered another blood test for next Tuesday and then a follow up appointment on the Wednesday to give us the final verdict but it was a huge relief to hear that it was nothing to worry about.

Still got our first follow-up PET/CT scan coming up on the 19th of this month, and then a welcome holiday for 2 weeks with family & friends overseas which couldn't have come at a better time.

Hopefully the recovery process continues to progress, and we can't wait leaving for our vacation with an all clear results from our docs in a few weeks time!

Kindest Regards
Jay, Jen & Hunter.
Posted By: tamvonk Re: Concerns over PET scan - 03-08-2013 05:47 AM
Well that all sounds wonderful Jay. I really am thrilled for your Family.
Having a much needed holiday to look forward to and enjoy will be the icing on the cake. Enjoy.
Tammy
Posted By: donfoo Re: Concerns over PET scan - 03-08-2013 08:01 AM
Thanks for the update, Jay.

Love to hear nice stories of recovery, always helps those just starting on the trail. Sounds you have everything going with the wind on your back. Enjoy!

Don
Posted By: Jay Jeong Re: Concerns over PET scan - 03-20-2013 11:09 PM
Hi all,

Just got back from our ENT doctor who told us our first PET/CT scan is clear..

She also did a full scope and said all looks well apart from a bit of inflammation at the back of her tongue where the surgery took place.

We are now on 3 month check ups with her and will see her again in June.

It's been an incredible 8 months for us and both myself and Jen are so relieved that we have got over our first major milestone with a clean bill of health.

Will keep the updates on this post going to let you know how we do and any future status changes!

Thanks
Jen, Jay & Hunter!

Posted By: Hockeydad Re: Concerns over PET scan - 03-21-2013 12:16 AM
That calls for the N........E........D! N..........E..........D!

Congrads.
Posted By: ChristineB Re: Concerns over PET scan - 03-21-2013 12:26 AM
Excellent news! Congrats on the great check up!!!

Best wishes with Jen's continuing recovery.

Posted By: KP5 Re: Concerns over PET scan - 03-21-2013 01:45 AM
Congratulations!!!!
Posted By: donfoo Re: Concerns over PET scan - 03-21-2013 07:32 PM
That is excellent news. It is great to get that good report.
Posted By: julieann Re: Concerns over PET scan - 03-21-2013 10:53 PM
CONGRATULATIONS, Jen and Jay!! That is the kind of post we all love to read. So happy for you.

julieann
Posted By: tina77 Re: Concerns over PET scan - 03-22-2013 03:44 AM
Best news ever!
Posted By: Jay Jeong Re: Concerns over PET scan - 04-11-2013 02:37 PM
Wow.. can't believe it has been 3 weeks since our last update.

Jen continues to improve on a daily basis and has now recovered around 70% of her taste back and her energy levels seem to be improving as well. Speech function has improved drastically and people rarely notice that she has almost 80% of her original tongue missing and we have been very fortunate that her saliva glands continue to function with minimal impact from the radiotherapy.

Side affects seem to be minimal although she has been on her thyroid medication ever since we found out that she was struggling with hyperthyroidism due to her pregnancy followed by hypothyroidism due to her radiation therapy.

Next checkup is on the 20th of June with our ENT doctors but until then, we are trying our best to continue our lives as normal as possible and enjoy our time with our now 8 month old lil boy.

I hope our story provides some glimmer of hope to those currently going through treatment and I will make sure to update this post on a frequent basis to provide updates as we strive to live life past cancer.

Jen, Jay & Hunter
Posted By: ChristineB Re: Concerns over PET scan - 04-11-2013 04:45 PM
Its not unusual for oral cancer patients to have thyroid issues after radiation. Ive seen a few with issues like Jens. Most of us can be managed with one little pill a day, I now take thyroid meds every day too. Once a patient begins taking these pills to regulate their thyroid, they will need them for the rest of their life. Its really not a big deal at all.

Thanks for posting, it really does help to give others hope. Best wishes with Jens continuing recovery!
Posted By: KP5 Re: Concerns over PET scan - 04-11-2013 10:30 PM
Great to hear from you. Sounds like life is moving on and still getting better and better. Always good!!
Kathy
Posted By: gmcraft Re: Concerns over PET scan - 04-11-2013 10:46 PM
Jay, when my husband was diagnosed and then when he started treatment, I followed your posts diligently because I found in them hope for me. Congratulations on the continued improvement.
Posted By: Jay Jeong Re: Concerns over PET scan - 05-10-2013 10:22 AM
It has now been over 5 months since Jen's last radiation treatment session.

Since the last update, nothing really much has changed apart from some of the sweet tastes becoming a little bit stronger, and the swelling from the lymphedema subsiding.

Still no pain or discomfort in and around the treatment area which I assume is a good sign, and speech function is probably now 90%+ of what it used to be which everyone is considering a bit of a miracle considering the extent of her surgery.

Been very fortunate with her recovering so well, and we are trying our best to focus our minds on our now 9 month old bubs, my business & just everyday life. We have our next check-up with our ENT doctors on the 28th of June, and I look forward to posting again with some good news once more in a few weeks time!

Jen, Jay & Hunter
Posted By: davidcpa Re: Concerns over PET scan - 05-10-2013 12:34 PM
Sounds GREAT!!!!
Posted By: Cheryld Re: Concerns over PET scan - 05-10-2013 06:50 PM
Awesome best of luck
Posted By: tamvonk Re: Concerns over PET scan - 05-11-2013 08:26 AM
Life is sounding great Jay.
So thrilled for the 3 of you.
Tammy
Posted By: Jay Jeong Re: Concerns over PET scan - 06-24-2013 03:45 AM
Hi all,

Well - it has been a month and a half since my last update and I was thinking whether or not starting a new thread or keeping the updates in one spot.

I thought it might be best to continue this thread although we are technically in after-treatment phase as I thought it might be useful for people currently in treatment to see how others recover and regain portions of their life back over time.

Firstly the good news - we were given another NED last week by our ENT doctor who was very happy with how Jen has been recovering and told us that all the swelling in and around the nose cavity, throat & tongue have now settled down and it looks all clear. This is reinforced by the fact that Jen has much better speech & eating functions (she is able to have spicy food again - hooray!) and has not been any pain since treatment ended 6 months ago.

We also had our meeting with the endocrinologist for her thyroid related issues and we were told that the hypothyroidism was not caused by the radiation therapy as first assumed but was due to Hashimoto's Disease - a common thyroid related problem with females which would have occurred sooner or later but was accelerated by Jen's pregnancy.

On the other side of the spectrum, we do have some concerns over Jen's recent CT scans which showed some focal consolidation in her left lung. All three doctors we have spoken to think its either mild pneumonia or bacterial infection but have not been able to disregard it being something malignant. To make things more mysterious - Jen has shown zero symptoms apart from shortness of breath when carrying our baby around which makes things even more confusing..

Our ENT doctor has now passed this onto specialists at our treatment hospital for a final opinion and we are waiting for our next step while they figure this one out.

All in all, progress has been good but we are consistently reminded that this is a long-term fight and we will need a few more years for us to be given the all clear.

Wishing everyone all the very best in their quest to ridden the beast and I will make sure to keep you all in our prayers.

Jay, Jen & Hunter


Posted By: Cheryld Re: Concerns over PET scan - 06-24-2013 03:32 PM
Fingers crossed it is only pneumonia or some other such thing... keep us on board with what is going on, and I am saying prayers for you. hugs.
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