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New member (caregiver)

New member (caregiver)

Posted by JoanneA on Dec 3, 2019 12:53 pm

Hi all.  Hope everyone is well.
Looking for advice.  My dad has been diagnosed with a 5 cm adenocarcinoma in the right lung.  We’ve gone for the PET and MRI of the brain and hoping for good results tomorrow.  Prior to this the pulmonary doc is staging it as a 3.
Other than all the usual worry my biggest concern is the pain my dad is having.  The tumour is invading the chest wall.
We meet with rad and med onc at the Juravinski this week.  
Besides the long acting and short acting hydromorphone - is there anything else I can suggest?? Nerve block? Cannabis products? At this point he will try anything 
Coughing and shortness of breath are terrible as well
Thanks for reading

Re: New member (caregiver)

Posted by Brighty on Dec 3, 2019 1:15 pm

Welcome to the site JoanneA‍ .    I'm so very sorry about your dad's diagnoses.    Although I don't  have experience  with lung cancer  I'm going to introduce  you to some people who are able to help you.   Cynthia Mac‍  is caring for her dad with lung cancer. .. Faye‍    WestCoastSailor‍    and Dave73‍  are just a few people I'd like you to meet.    They will be able to advise you based on their various knowlege and experience .      

Re: New member (caregiver)

Posted by JoanneA on Dec 3, 2019 1:18 pm

Thank you very much 

Re: New member (caregiver)

Posted by Melanoma on Dec 3, 2019 1:36 pm

I to am being treated at Jurvinski although not for lung cancer 

You have a excellent cancer team at that facility.

Use them and ask what they suggest , be frank with them and express your concerns

You don’t want to try something that may jeopardize his health any further and his treatment options .

I hope this helps 

Re: New member (caregiver)

Posted by Cynthia Mac on Dec 3, 2019 4:55 pm

Hi, JoanneA‍ , I’m sorry to hear about your Dad. My Dad’s lung cancer metastacized to his liver this year. His is a rare form of non-small cell lung cancer. From what I’ve read, the type of cancer your dad has is a common form, (found in about 50% of all non-small cell lung cancers) which hopefully means there’s been more research done, and more treatment options available.

Your dad’s doctors will be the best resource for managing his pain over the long term. I know we don’t want them to be on hydromorphone, but, a recent run-in my Dad had with a rocking chair (he fell over it) proved to me that we don’t want them to be in pain, either.

My personal stance on CBD products is that if they were such a “be all,” the doctors would be handing them out along with or instead of other treatments. Some people say it works for them and others say they haven’t seen a difference, and it’s probably going to be a few more years before we have any clinical study results.

Please track all your concerns about your dad along with any questions and have whoever is going with him to his appointment tomorrow make the inquiries.

One thing to keep in mind is that the staging is apt to change as more results come in. Dad’s cancer was operable (originally), and before they did the surgery they thought he was stage 1, maybe 2. After surgery, that changed to stage 2b or 3a. Someone here on the site has said “staging is just a number.” True, and regardless of the stage, it’s still cancer.

If you have any questions, just ask. Tomorrow is Dad’s chemo day, and if I can’t respond myself, someone else will offer help.

Re: New member (caregiver)

Posted by JoanneA on Dec 3, 2019 5:43 pm

I really appreciate your feedback Cynthia.  Thanks for your response.  Good luck with your dad.  I hope he does well

Re: New member (caregiver)

Posted by Dave73 on Dec 3, 2019 6:39 pm

Hi JoanneA‍ 
i also am being tried at Juravinski hospital. First for the pain go with your team they can help you the most! They know you, ASK questions you need something stronger then morphine maybe? Ask. Cannibis will not help with the pain , but might take a lot worse away for a bit lol. Remember also tell your team before introduce something new to your diet. I was honest with my oncologist and understood and most importantly didn’t react with my immunotherapy. It helps me mentally , gives my mind a break from thinking 🤔 cancer cancer cancer. I’d like to follow his progress update us. Sometimes getting it also helps
David

Re: New member (caregiver)

Posted by WestCoastSailor on Dec 3, 2019 6:50 pm

JoanneA‍ 

Similar story to mine. Tumour was a little smaller and there was no pain. Because it was staged at 3C (some mediastinum lymph nodes affected) I was treated initially as curative. That meant an aggressive chemo/radiation to kill the tumour and then the latest immunotherapy to clean up.

Unfortunately durvalumab (Imfinzi) didn't work for me. Now I'm receiving a targeted treatment - afatinib - that is proving to be quite successful. The cancer has metastasized to my left lung and is now classified as terminal but you wouldn't know it to look at me.

My pain management knowledge comes from a completely different direction. A year ago my wife died of pancreatic cancer. Morphine became ineffective for her quite quickly. She was moved to a mix of fentanyl and dilaudid (hydromorphone). Fentanyl literally gave my wife back. The buildup of morphine had given her hallucinations and other fun side effects. While the current health crisis has built a scare into fentanyl, it does have legitimate uses.

I dare say this is going to get better before it gets better. Have they talked about any kind of treatment plan yet?

Angus

 

Re: New member (caregiver)

Posted by JoanneA on Dec 3, 2019 8:33 pm

Angus I’m terribly sorry for the loss of your wife.  Thanks so much for taking the time to reply.
Fingers crossed we leave the cancer Center tomorrow with a game plan in terms of treatment and something stronger to deal with this pain. You do hear the horror stories of Fentanyl - but when dealing with legit pain it’s another story altogether 
Take care of yourself

Re: New member (caregiver)

Posted by Melanoma on Dec 4, 2019 6:34 am

Wishing you all the best today at your appointment.
Write down everything you want answers to , so you don’t forget.

Re: New member (caregiver)

Posted by Kuching on Dec 4, 2019 8:02 am

JoanneA‍ , I have stage 4 lung cancer, but it doesn’t hurt yet.  However, like Westcoastsailor, my spouse has pancreatic cancer and was in serious pain for a couple of months, taking hydromorphone and Tylenol.  He was hallucinating also.  They gradually switched him to oxycodone, and the hallucinations are gone, and a lot of the pain is gone too.  On the paIn scale, he went from an 8 to a 3 just in one week.  Morphine just doesn’t work for some people.  So - keep after the doctors until they get it right!   Either oxycodone or fentanyl would seem like the next thing to try.

Re: New member (caregiver)

Posted by Ten77 on Dec 4, 2019 8:57 am

My husband was having to take a lot of dilaudid the first while . His lymphoma created a destructive mass on his sacrum .  
my best advice is take pain meds as prescribed , and take them consistently it is easier to stay on top of it than to chase it.  
if dr gives opioid meds ask pharmacist for a naloxone kit just in case.  In a pain crisis it’s easy to double dose.  

initially he was given way way to low of a dose and I had to get “firm” with his family dr and get an appropriate dosage to control pain.  

sorry you are going through this, it’s a rough ride but it is doable. 

Re: New member (caregiver)

Posted by Faye on Dec 4, 2019 9:42 am

JoanneA‍ 

I am sorry for your Dads diagnosis, I know it’s not an easy time. Also understand how many unknowns for you at this time.

I think you will find that after you have appointments with your oncologists you will be able to better understand the diagnosis and treatment. Be sure to discuss the pain management with them and keep them informed on pain status as they are very good with keeping your pain under control.

I am a 3 year lung cancer survivor, so I want you to know there is hope for successful treatment. 
If I can be of support please don’t hesitate to ask.

Faye

 

Re: New member (caregiver)

Posted by CentralAB on Dec 4, 2019 2:09 pm

JoanneA:
Angus I’m terribly sorry for the loss of your wife.  Thanks so much for taking the time to reply.
Fingers crossed we leave the cancer Center tomorrow with a game plan in terms of treatment and something stronger to deal with this pain. You do hear the horror stories of Fentanyl - but when dealing with legit pain it’s another story altogether 
Take care of yourself

re correct. If a person does actually need it for pain, chances of addiction are much smaller; but then, in some cases, that wouldnt even matter. In my wife's case; the patches (fentanyl) have been a godsend to be sure. That combined with a few other things. When Symptom control or management is the priority, then it wont be so much of a concern. There are many ways and techniques to manage the pain; so as others have said your treatment team will be the ones to go to for any concerns. Im sure some of us can offer some tips along the way, but those should of course always be checked by your doctor. The Cannabis idea may be of help. Some doctors dont want to get involved in prescribing it. But if one were to buy cannabis on their own to use for pain management, make sure your doctor knows about it. Very important. Im sorry to hear about your Dad's diagnoses. I can relate to some of the struggle and questions. My Dad died of Leukemia a few years back. Glad you came here to the forum. When you cant carry yourself, sometimes the others here can carry you. We help ourselves by helping each other.