After my mother-in-law's cancer of the tongue and surgery in 2010, no chemo and no radiation. The right side and base of her tongue was removed. The actual "skin" of the tongue was not removed, the cancer was scraped from the inside, meaning her tongue is now hallow.

Another form of oral cancer was diagnosed this August/September: cancer of the right cheek muscles and cancer of the lower mandible jaw. 10/10 she is scheduled for the removal of the cancer on her check muscles and also removal/reconstruction of her lower mandible. The size of the tumor is her jaw bone is 2cm, it can be larger they said. They will implant titanium to replace her jaw bone. There could be a possibility that they will remove part of her underarm skin/flesh to serve as a flap.

A month after her surgery she is scheduled for 33 radiation sessions followed by chemo therapy. Kindly include her in your thoughts and prayers. She is very weak that is why she is going to be confined a day and 1/2 earlier than her surgery.

Best wishes with the big surgery! Try to stay with her while she is in the hospital as her advocate. Anyone undergoing a major surgery like this needs someone to be with them. Make sure the pain meds keep coming as without it she will be in alot of discomfort. As I mentioned on another thread, ask for a possey muir valve trach if she will be getting a trach.

Best wishes for a smooth surgery and a fast recovery!!!

[quote=ChristineB]Best wishes with the big surgery! Try to stay with her while she is in the hospital as her advocate. Anyone undergoing a major surgery like this needs someone to be with them. Make sure the pain meds keep coming as without it she will be in alot of discomfort. As I mentioned on another thread, ask for a possey muir valve trach if she will be getting a trach.

Best wishes for a smooth surgery and a fast recovery!!! [/quote]


Hello Christine... none of her children will be with her since we are in the USA. Her sister will be her voice. I think it is more frustrating for us since nobody in Manila is asking the right questions. They said she will just be in the hospital for 4 days. That part I don't understand. She is not in a Cancer hospital..I don't think they have that there. How frustrating.

Thanks again...keep you posted.

SURGERY UPDATE:

I'm at makati med now. It's 530pm, and Tita Josie has been out of the operating room for about 2 and a half hours already. I saw her in the recovery room. She looks ok, and she was already a bit awake about 30 minutes ago though still quite sleepy from the anesthesia. The doctor said the operation went well, and they were able to remove all of it. They've placed a titanium plate at that part of her jaw, and there wasn't any need to get any flesh from any other part of her body for the reconstructive part because they were able to just flip the flesh back up where they did the surgery. Per my mom, the doctor told her there won't really be any obvious signs of the operation except maybe a small dimple at her jaw.

They're moving her to a room at the ICU, but its not because she needs critical care, but to monitor her. The doctor said during the operation there was a time when she had a little trouble breathing so her breathing was assisted for a short while during the surgery. But she's been breathing fine since the operation. She doesnt have a breathing apparatus now or anything like that, she just has the normal monitoring equipment. The doctor said she'll probably be in the ICU for maybe up to 24 hours so they can monitor her there. Possibly shorter though.

Hopefully the post operation recovery will be smooth, but from what I heard the surgery went well today.

Wow sounds great!!

Thanks for the update. From your latest news, it sounds like she will be one of the very lucky people who have had a mandibulectomy that have had an easy time of it. To have that type of major surgery and not need a flap or graph makes her recovery so much easier. There wont be any second site or trach to worry about. Hoping she continues to do so well and her recovery is a speedy one. She is doing excellent!!!! Im sure you are very relieved.

Thank you so much for your thoughts and prayers. I will continue to update you as I hear news about Mom. They are keeping her in the ICU until further notice.

Best wishes and hope she recovers well.

UPDATE AS OF LAST NIGHT (SHE IS ON A RESPIRATOR)

"Hi everyone. I spoke with dad a short while ago. He said that Joyce is still in the ICU. He said most of the doctors cleared her to leave the ICU, but doctor who monitors her breathing wants her to stay on the respirator a while longer. Apparently, the tube in her mouth is for the respirator, so I was wrong when I said yesterday she wasn't on the respirator anymore. Very sorry about that. Dad said that the respirator is only in the ICU so that's why she'll have stay there for now, but he said she's ok otherwise." . . . direct quote from family in Manila

Your thoughts and prayers are highly appreciated and I will continue to update you as information is sent to us.

More Updates:

"I just spoke with my dad, and he told me that Tita Josie is still in the ICU room on the ventilator to help her breathe normally. He said she was also given some medicines (though they can't remember exactly what medicines) to stabilize her kidneys. She also received a blood transfusion today because her blood count was low."

I am very worried at this point....

Hello OCF,
Just wanted to give you an update - please read both updates listed below. Mom is not doing well as we thought. We only get 3rd hand updates since none of the children are with her. I would like to ask if you think that she is in serious condition and if it is time for at least 1 child to go and be with her. My husband and I are leaving in November for 20 days to be with them. More suggestions and inputs are highly appreciated.

Mom is 72 years of age, with hypertension, heart problems aside from the cancer and other complications listed below.

When is it the right time to leave the USA and be with her?

Thanks,
Ina


Update as of 5:50 am EST 10/11/2012
I just spoke with my dad, and he told me that Joyse is still in the ICU room on the ventilator to help her breathe normally. He said she was also given some medicines (though they can't remember exactly what medicines) to stabilize her kidneys. She also received a blood transfusion today because her blood count was low.

Update as of Oct 11, 2012, at 2:17 AM
Hi everyone. I spoke with dad a short while ago. He said that Tita Josie is still in the room at the ICU. He said most of the doctors cleared her to leave the ICU, but doctor who monitors her breathing wants her to stay on the respirator a while longer. Apparently, the tube in her mouth is for the respirator, so I was wrong when I said yesterday she wasn't on the respirator anymore. Very sorry about that. Dad said that the respirator is only in the ICU so that's why she'll have stay there for now, but he said she's ok naman otherwise.

I had a couple transfusions while I was in for the mandibulectomy also. That is not so unusual so dont be upset by her having this done. This surgery is a not an easy one at all. Having a big section of your body removed and then another area transferred over to that spot is very invasive. This is why I mentioned that there is no way she could only be in the hospital for a couple days. There are too many variables and things that need to be closely monitored. This is too new, her body needs time to heal.

Think positive!

** added after saw the 3rd update.... I know you are upset but it does sound like she is having fairly a normal reaction to such an invasive procedure.

The question of when to go to be with her is something we wouldnt be able to give you advice about. We are fellow patients and caregivers who do not have medical backgrounds. We do not have her entire medical chart in front of us or many years of medical training and experience to help make decisions.

As I advised previously, someone should be with the patient at all times when anyone is going thru a major surgery. This applies to any type of operation. But it is especially important when a patient may not be able to advocate for themselves. In my opinion part of the issue here is the family's lack of attention to the seriousness of her illness. A mandibulectomy is not a walk in the park surgery. Its very complex and has a high risk for complications. Im very sorry to hear she is not doing well. I knew a hospital stay of only a couple days would not be enough for this type of procedure.

Being so far away you will have to trust her medical professionals to do the best they can for her. If at all possible someone needs to go to her so they can speak for her and watch over her. It needs to be someone who is attentive and will speak up, someone who will stay by her side. What you have described really does sound pretty common with having a mandibulectomy. I was in a medically induced coma for 3 weeks but I had complications with the transferred skin so my case was much different. I wouldnt be surprised to see a patient spending 5 days in ICU before being moved to the regular section of a hospital.

Thanks Christine. I think they are in denial about the entire process. I think I am more realistic since I lost my mother to a stroke in 2006. My mother's sister lied to me and told me that she was not doing well. I only knew the truth my our pastor in church called me and urged me to go home. You see people are painting a pretty picture for them. Always saying she is moving to a regular room. She is not on a ventilator / respirator. My husband and I are going to visit family due to my Papa since he needs his overdue full annual exam.

I appreciate all the thoughts, prayers and concern. I will keep you posted, hopefully more news tomorrow early morning.

Ina

October 12 Update:


"Mom and dad said She's not on the ventilator anymore, but she is still receiving oxygen. She had been receiving 100% oxygen before, and now they have already been able to lower it to 24% only now. They're weaning it down slowly.

Maybe you can explain exactly what that means? Mom is a little confused between which is the ventilator and how she's being given oxygen. Tita Josie's nose is already free (nothing attached there anymore), but she still has the tube to her mouth, which I am assuming is how she's being given oxygen.

Her kidneys are ok, and mom said her attending physician said her blood count is ok already, so no more need for additional blood transfusion. Mom said they are waiting for the pulmonologist to give the go signal as to whether she can be transferred to a regular room."

Thanks to all your concern.... Ina

Hello Ina, sorry to hear of your Mother-in laws diagnosis and surgery.
A ventilator/respirator is a machine that breathes for the patient when they are unable to do so themselves. Either because they are sedated/unconcious or they have muscle paralysis.Usually after an operation it is because they are sedated.
It is normal for the oxygen to be weaned according to the patients oxygen saturations - this is a measurement of the percentage of oxygen in the blood. Depending on chronic lung problems the patient may have, anything over about 95% is good.
You and I breathe in atmospheric oxygen which is 21% so your Mother -in-law having 24% O2 is about back to normal.
You say she has a tube in her mouth? This could be the endotracheal tube that was used to ventilate her and they could well leave this in place, but not attached to the ventilator ,until they are confident that there is no longer any throat swelling. It would be normal to attach oxygen to this oral endotracheal tube. Did she not have a tracheostomy?
Once the endotracheal tube is removed she would be able to move to a regular room.
Hope this helps. Sounds like she is doing okay.
Tammy

Joyce is doing well post surgery.

Update as of October 13 from a relative:

"Joyce is completely awake. The mouth tube is gone, but her tongue is still a bit swollen so she can't speak well, so she writes things down instead. She seemed to be breathing normally already when I was in her room. I think she's receiving her food via the IV (dextrose?) since she isn't eating or taking fluids by mouth yet. From I heard this afternoon, they expect her to be transferred to a regular room by Monday, and might be able to go home Tuesday or Wednesday. I am wondering if the doctors will come to the hospital tomorrow which is a Sunday. If they do, I guess there's a chance she'll be allowed to move to a regular room tomorrow."

Great news!!!

Good grief. Your patience is very impressive!! I would be nuts by now!!
Glad to hear things have calmed down a bit. Thanks for the updates.
Kathy

Good evening everybody!! We just got an update that Joyce is doing so well. She can now sit up and write down what she wishes. She hopes to be moved to a regular room today (Sunday morning there). She is still in so much pain and she told my father-in-law that she is not physically ready to go home. We assume by mid-week she will be allowed to go home.

Thank you again. Ina


BTW: After surgery how many weeks does it take before they start the radiation therapy? Is radiation more bearable than chemotherapy? Hope Joyce gains weight before that. We were told she has not been eating solid food since March 2010.

m sure you are very relieved that Joyce has begun to come around after the surgery. So glad she is doing better!!!!

Here in the US radiation will usually begin 6 - 8 weeks after surgery.

For oral cancer chemo enhances the radiation. Some patients only get radiation while others get both. To get thru radiation she will need to take in 2500 calories and 48 oz of water every single day. She will also need a caregiver to take care of her and watch her intake, medications, take her to treatments, etc. Hope she will have a very good support system in place for the next phase of her treatment as she will really need alot of help.

Thank you so much Christine. She has a full-time caregiver (LPN) that will be with her as she recovers after the surgery and during the radiation therapy. We are also visiting for a few weeks but won't be sufficient time to be with her during the radiation series. After which, her other daughter is coming during the chemo phase hopefully next year.

I hope she will have a smooth recovery. As of now she is in a lot of pain.

So glad she's doing well!! /)

Finally things look forward.

Hello Everybody!!

Joyce is back home. She has a home health nurse that watches her 24 hours a day (2 people). She has a naso-gastric (NG) tube for feeding. She said she is sleeping better but still in pain. Once she is ready may be in 4 to 6 weeks they will start her radiation.

Thanks to all of you!! God bless!

Glad to hear all is progressing well.

Ina, what a great update! I know how worried you had been. Im so glad Joyce is doing better and is home. The 24 hours nurse is a very good plan for recovering from this major surgery. Best wishes to her with her continued improvements.

Glad she's doing well. Hugs to you all!

Thanks for the update. Sounds like a good plan!

Hello everybody!! Some good news for everybody!! Joyce is doing well. The only down side is the cost of the surgery. The in laws miscalculated all expenses. The money sent has been spent. So the children are facing a big challenge ahead once she starts radiation treatment. The absence of health insurance is becoming a huge issue.

Currently she still has a feeding tube which they assume will be kept for another 3 weeks. She also has a home health nurse that comes during the day time while she has a care giver at night.

About her surgery, she has a big cut from the base of mandible (below the ears) up to the front or middle of her chin. Basically half of her mandible was surgically opened (sorry I don't know the medical terminology). She is still on pain medication.

Nevertheless, we hope that she will continue to progress and be healthy for the next phase...33 sessions of radiation.

I understand money is a big concern but this is something everyone needs to accept cant be rushed. Nobody can put a price on this procedure and radiation saving her life. I cant imagine paying for something like this out of pocket. After all my surgeries Ive used way over a million dollars in medical care. Recovery cant be rushed, it will take months. I had complications and ended up taking a full year to recover from my mandibulectomy. She probably will require a feeding tube right thru until a couple months post radiation. Without proper nutrition and hydration she will not heal and bounce back. This is even more important during radiation treatments.

Your medical terminology is fine! We are not doctors or professionals so its easy to understand how you explain things. Ive lost the same amount of my lower jaw bone. Its a very large section! Pain could be a factor for a very long time.

Glad to hear Joyce is hanging in there and making good progress. Hope she keeps her spirits up as she still has a long road ahead of her. Best wishes!!!

Ina - I can so relate to your concerns about the cost of cancer care but Christine is SO right about not putting a price on saving a life! When my son was first diagnosed he was out of a job, in therapy for depression and newly divorced. I thought we would be able to handle all the expenses but when the hospital bills started coming in from several different departments of the hospital, it was overwhelming! The hospital told us we could pay as little as $5 a month but that didn't last long, especially with all the other household expenses. It was a big source of stress for him - he sold everything he had and having to sell his motorcycle was particularly painful. He ended up going bankrupt which knocked the wind out of him more than anything else. It does get better, though. My son has been cancer-free for almost 6 years, now. He has a great job, a beautiful significant other to share his life with, and not just one but two motorcycles. It is difficult to deal with money problems but it is important to remember: "People before Things". Things can be replaced. People can't.

Hello to everybody,

Haven't posted recently since I got busy. We are getting ready to visit my Papa and my inlaws in November. Just called Joyce and she is still on feeding tube. She is able to walk around. Still in pain. No word about radiation since she is still weak. Not sure when her next appointment will be. Keep you guys posted.

Take care everybody!! Stay healthy.

Ina

Thanks for updating! If we don't hear from you before you go, have a wonderful visit!!
Kathy

Ditto have a great trip, give her a huge hug of support from those of us at OCF.

Hello guys, I am back from our "medical mission" visiting our elderly and sick parents. We were there for 18 days. Joyce has started her chemo when we were visiting. she is very responsive to the treatment and we just learned yesterday that she started losing her hair from the chemo treatment. A friend went there yesterday to cut her hair, now it is about 1cm long. She has no complains. Her next chemo treatment is December 13 then the last in Jan 2013.

The doctors decided to opt out of radiation and to focus on chemotherapy. They wanted to make sure that the particles seen on your lungs will be "killed" or removed by chemotherapy.

Let me know what you think about that decision. Nice to be back home.

Hope you had a great trip! Thanks for posting an update. Joyce has been thru alot! Glad to hear she is doing so well with her recovery.

Hi... Not sure what kind of chemo she is getting its likely not just cisplatin if she's losing her hair. I know she's older and they might not want to put her through the trauma of rads but after her chemo is done she should definitely have rads if a cure is what you are looking for - chemo alone is said not to kill oral cancer. The chemo aimed at her lungs is great but to get rid of the oral cancer or any that may be lurking she should have both. good luck glad you had a nice visit.

Unfortunately I took the back seat when they went for their first chemo treatment. I had to take care of my Papa who I had to take for his complete medical check up. He lost weight massively and was diagnosed with severe hyperthyrodism and COPD/Emphysema. He lost so much weight, he was a walking skeleton with skin. Immediately he quit smoking.

It was a very stressful yet very successful visit.

Hyperthyroidism could cause the weight loss. Hope they got it all sorted out.... He should have quit smoking ages ago... Did they do a full chest workup on him? You certainly have your hands full. Hugs!