Hello everyone. It has been a long time since I have been here and I want to update everyone on Carol's progress. Unfortunately it is not good news.

After her surgery last August Carol was healing well (or so we thought) but began getting that damn pain back right below her left ear in November. She had a PET/CT Scan which according to the Doctor didn't show anything. Last month she had a CT scan that showed cancer on her lower lip. Surgery was scheduled for 2/9/11 that would consist of removing all her hardware in her mouth, removal of lower lip, using an Anterolateral Thigh Free Flap and rebuilding her mandible.

While in pre-op Wednesday am, the surgeon looked inside her mouth (which was difficult due to trismus), canceled the surgery and ordered another CT scan. The results are the cancer has spread along her left side of mouth, wrapping itself around the nerves. The surgeon said it was inoperable. He is to present her case to the Tumor Board today and will call tonight with, if any, options. He did mention possibly clinical trials or chemo which Carol said no to both. We both believe more chemo would be ineffective and put her in more pain than she already has. Carol never had a port and her veins are "blown out". Taking 1 tube of blood is very painful, WHEN they can find a vein.

Carol applied for Hospice which will provide comfort care and ensuring she has all her needed medications, enteral foods and equipment. It has been rough juggling between her medicaid with share of cost and charity on a monthly basis. Carol is still mobile and able to do most things by herself, but is spending more time in bed.

I do have a question regarding her medications through Hospice maybe one of you knowledgeable folks here may be able to answer. According to Hospice's pharmacy (??) they will not provide Carol's medication for her folic acid (anemia since 2/2010) nor her Levothyroxine (TSH went from 1.4 to 4.5)(thank you Charm for the info). All the other meds are "okay", 150mcg fentynal (recently increased from 100mcg), Lortab (breakthrough), gabapentin, anti-depressant, sleeping pills, lactulose. I explained to the nurse Carol's anemia and TSH level was a direct result of her treatments. Should I insist Carol continue those meds? I was pretty adamant about Hospice not changing her current medication regime...UNLESS it would relieve her pain and still be lucid and aware of her surroundings. The nurse also told us the Doctor may change her pain medications - Oxycontin was mentioned. Is Oxycontin viable for terminal head and neck cancer patients? There's just something about Oxycontin I'm not comfortable with. Carol has a high tolerance to opiates and pain. As she just got into Hospice, I can't see anyone denying her medications nor changing the medications until they have read her medical records. This has me leery and I'm not sure if this nurse would be a good fit. The Hospice doctor is scheduled to be here this week.

Sorry about the long post. A lot has occurred the past months and my attempt to "consolidate" information is feeble at best.

Linda

Oh Linda, I am so sorry to hear about Carol. I have been wondering about you two...you are both in my prayers.

Hugs,

Shelley

Linda

Such sad news. I can only guess at the hospice's for denial of her Levothyroxine is that they follow the outdated yet prevalent lab values which indicate to doctors from the 20th century that a TSH level of 4.5 is just fine. So from their point of view, this is just an unnecessary supplement. One course of action would be to ask the doctor who understood that is not right to go from 1.4 to 4.5 and prescribed Carol the Levothyroxine to write a letter to the hospice explaining that it is "medically necessary". If they don't reconsider, you could just keep refilling the prescription and bring it with you to give to Carol. Hospice isn't a prison and while they may insist you can't take any medications, enforcement is another issue. You can put them in a tic tac box if needed so everyone is happy. But its very important to discuss this issue first with the doctor who prescribed Carol's TSH medications as there may be valid reasons to discontinue the Levothyroxine which aren't apparent to me.
I did a quick search and found that Oxycontin is pretty standard for terminal cancer patients. Here's a link to an abstract of one study which concluded
[quote]We conclude that the use of high dose OxyContin for terminal cancer pain management is safe, efficient, and unrelated to shorter survival times. The results suggest that health care professionals may use higher OxyContin doses, when indicated, to enable better pain relief and quality end-of-life care.[/quote]
NCI oxycontin terminal patients
So the nurse may just be trying to help based on their experiences in dealing with terminal patients' pain. You can always advocate with the doctor to get her pain meds changed back if they do switch to oxycontin and it doesn't work for Carol.
again, sorry for this development
Charm

Hi Linda,
I am so sorry to hear of Carol's latest diagnosis. Hopefully they can find some way to operate.

If she is not taking her thyroid meds, her TSH could go much higher depending on how long she has been of the meds so watch it carefully. I would insist that she get this medicine. If it gets too high, it can kill you.

Take care,
Eileen

Linda,

I, too, am very sorry that Carol's recurrence is so dire. I hope you can get the assistance you need to make Carol as comfortable as possible. Please come back here for support. I think a lot of us have thought of you both over the months.

Oh No. I am so very sorry to hear this news. Carol was apprehensive about the surgery but I don't think this scenario ever occurred to her. Please tell us our thoughts and prayers are with her.

Donna

Linda, Im very sorry to hear of Carols problems. I do not have answers to your questions. I just wanted to let you know that you are not alone, we are here for you both. Look for posts from Cookey, she used to be a hospice nurse (in the UK), but its is similar. I sent her a note on FB.

Best wishes!

Hi
I don't know if i can be a great deal of help here as the hospice system in the UK seems to be slightly different to the USA but i will try.

Firstly in the UK Hospices are in patient units dedicated to pain management,therapy and end of life care.They also have day therapy units where patients are brought in once or twice a week for respite,lymphoedema treatment and counselling.

A fairly new addition to this service is hospice home care for people who want to remain in their own homes.

Am i right in thinking your hospice care is undertaken at home?

When hospice takes over the first thing that should be undertaken is a full patient history,review of medication and details of family and particular needs and wishes of the patient.Every hospice employs a pain management consultant,and these doctors are specialists in the field of every possible combination of drugs to ensure the comfort both physically and mentally of your loved one,and in the case of terminal care,to ensure the most peaceful,painfree transition that is possible.


Any previous drug regime may be completely abandoned and replaced with one decided by the consultant,taking into account the needs and wishes of the patient,ie wether or not they want to stay fully conscious and aware,wether they prefer to be partially sedated and worse case scenario,full sedation where awareness is suspended.

Terminal cancer and its related anxiety brings with it exceptionally high levels of pain,and what you or i would consider dangerously high levels of medication are in fact the norm,and are well tolerated.I couldn't even begin to comprehend how Robin got out of bed every day and functioned with the levels of fentanyl,morphine,and related meds he was on,but function he did,and was more or less pain free for the majority of his 21 days in the hospice,but his meds were reviewed every day and adjusted if they were seen to be coming less effective.

Robin did not spend one day in bed until the day before he died when he chose to opt for full sedtation because of the size of the hole in his face,the smell,and the intense anxiety brought about by the high risk of thoracic artery rupture.

Linda all i can say to you is that you need to trust in hospice and hard as it may be you need to let go and step back just a little,and let them do what they do best.It may seem strange at first,and for sure if you don't think what they are doing is having a positive effect on carol then question it,but the first few days/weeks may be trial and error until they find the best regime to make her comfortable.

Good hospice care treats the whole family and your well being should be just as important as carols,a good hospice nurse should take the time to sit with you,talk to you,take on board your feedback from carol,discuss you worries and reassure you about treatment plans you may be worried about,but ultimately it should be the best way for you both to travel this most distressing of roads together and in peace.

My thoughts are with you and i will pray you have the strength to do this last thing for Carol xx

Shelley K

Thank you for your prayers and I will be sure to pass them on to Carol.

Linda

Charm

Carol's MO said that her TSH level was still acceptable although he admitted it was a little high. After further discussion he agreed to write the script. Her TSH baseline was established last January and a retest done this past month. The MO said it would be at least a year before there would be a significant change in the level. I don't know how true that is. She has been taking the Levothyroxine for about a month, and if it will help her comfort level and prevent any other symptoms from occurring I would like her to stay on it. We will be discussing this with the Dr when he visits. I was just wondering what others on this site thought of the continued use after being diagnosed as terminal and if it would be of help to the patient.

Oxycontin is a drug I have heard so much about on the news. People getting busted for selling it and pill mills getting shut down. It seems to be a recreational drug of this century. I have read that this drug can not be crushed but is available in liquid form. Carol has a high tolerance of Morphine and Oxycontin seems to be a viable option.

Thanks for your insight and the link.

Linda