Mornings Are gettin’ Harder

Mike

hang in there and stay positive,  my husband to the last month seems to really going down. Simple things are hard to do.  He is really depressed now.  But we must stay positive.   See your new doc and see what he says.  You may be pleasantly surprise.  Have courage, faith and hope in these dark days.  There will be light.

lots of positive prayers and good thoughts 

elizabeth 

Hi Mike,

I've only been reading this board for a week , off and on, but I noticed you were often the one encouraging others. I hope now others will encourage you! 

Tell all these symptoms to your new doc… could some be side effects of meds, or processes like arthritis, and not necessarily new disease indications?  

I hope you have a great appointment on Monday and get some answers. Hang in there.

Mike,

I remember when I was in pain, was unable to do my normal activities and expected to die in a few months.   I hope you can find an effective treatment for your melanoma.   For me that treatment was ipi/nivo.  Radiation and Keytruda immunotherapy had not helped me.

I have had pressure headaches off and on for over 2 years.   I think they are a side effect of Opdivo.   They are usually worse after an infusion of Opdivo.  They are not bad enough for me to take pain medication.  My oncologist ordered 3 brain MRIs for me due to my headaches.  These brain MRIs did not show cancer.

Mike – you may find it beneficial to meet with a palliative care doc. They are not only “end of life” practitioners. My husband had many pain issues and has been treating with a palliative care doc for years. Take care. 

Ann

Hi Mike, I take hydrocortisone pills like you (pituitary does not signal my adrenaline to produce cortisol after Ipi). I have found that setting my alarm clock for 6am and taking my hydrocortisone then has really helped me. I go back to sleep after taking hydrocortisone and levothyroxine. Then an hour later I wake up and feel normal by 8am. Also make sure your Endocrinologist has experience with immune related endocrine issues. I’ve serious had an endocrinologist tell me that I can stop taking hydrocortisone. I would have died (or at least ended up in the emergency room) if I had listened to advice. Another Endo prescribed 15mg of hydrocortisone per day and my third Endo prescribed 30mg per day. I think if your meds get adjusted then it will make you feel much better.

I'm so sorry to hear about your pains and side effects. It's always hard to keep positive when life just keeps up the beatings. Journaling was the thing that really kept my head above water when I was emotionally drained. I could let it all go, all my fears (emotional and physical) right there on paper, and somehow that always made me feel better. When I journaled, I didn't have the guilt of burdoning my husband with all the little torments that would make him worry.

I recently made a journal for cancer survivors that I handed out at a local cancer walk – I'd be happy to send you one! You can email me through my blog if you think it would help you.

Sending strength and well wishes,

Lauren

Hang in there Mike!  You've got this!  I hope the new doc can help you.  Be very transparant and tell them how bad it really is.  The best advice I got was to "be a complainer".  It's not my nature.  I'm an everything is fine kind of gal even with a dagger in my neck.  My husband also really helped me by saying "it's worse than she's telling you".

Stay as positive as you can.  Your will is going to help you.  We are all pulling for you.

Sending you good thoughts and good wishes,

Jennifer

Hi Mike, what happened to the cat photo??? I almost didn't recognize you!!! Your morning combination is very impressive, maybe it time for you to start a post about who has the best combination of drugs to get going in the morning. I think there would be some pretty interesting morning rituals!!!Take care bud!!!

Mike, I'm not a melanoma patient myself but I have Cushing's disease and have significant experience with hydrocortisone.   Your symptoms that you are describing are classic adrenal insufficiency symptoms.  The normal cortisol diurnal rhythm means that the body produces it's highest amount of cortisol at 8am.  I agree with the above suggestion to set an alarm to take your hydro at least one hour before you need to be out of bed.  I used to do that, and sometimes even ate a cracker or two — otherwise I could hardly get out of bed.  Everything hurt — like I had a bad case of the flu body aches.  

A "normal" dosage that would approximate physiological levels is 20mg in the a.m. and 5mg around 4pm. Making sure that you get a small dosage at night might also help you feel better in the morning.  (Hydro requires a lot of trial and error as far as dosing is concerned.  I wouldn't be afraid to take more or less depending on what your body is telling you.)

Alright Mikey, stop thinking about the pieces that are out of your control. You need to find strength and keep going. You haven't even been on pembro for that long yet to be sounding so down in the dumps man. You can do it!!! I'm about to get my 18th pen pembro in two weeks. It can really kick your ass until everything gets worked out.

That's the goofiest thing about this disease, the pain, nausea, headaches, body aches and all those other side effects can be treated. Also, not sure if your doc mentioned this but pembro can sometimes take a moment to start working so your next scan still has a chance for this to be positive treatment for you. If it helps, I can list off the meds I take to counter all my side effects.

Prednisone 10-15 mg – this a must. Only drug that dulled the pain in the joints.

Labetelol 100mg x2 – blood pressure med. Didn't need it before that I'm aware of and I'm down to 205lbs now so I should see severe improvement in this area as I thought it was because of my gut.

Gabapentin/narotin 400mg x3 -to be fair I was put on this before we discovered my back pain was cancer related but they've kept me on it and it does help.

Prilosec (double dose) – helps with coughing and phlegm for some odd reason but it does and it was serious problem for me at first.

Flonase – doc suggested this over afrin for congestion as afrin can be bad on you nose lining and can actually have a reverse effect if you use it too much. This has worked and I can get a 6pack at Costco for like 24 bucks or something like that.

Lidocaine patches – as you might remember Mike, I have severe damage to my spinal cord but I can still walk with a cane. Regardless, it still is in constant pain and the patches really work well.

That's not everything but in terms of side effect drugs these are pretty much it. I'm also on a ton of oxi but a large part of that is for my jacked up spine.

Stay positive brother, you got this, your a warrior so I know you won't back down, your probably just having a down in the dumps day. Also, if your not already taking one then you may want to request an antidepressant, it doesn't mean your crazy it means you've been dealt a shitty hand and it's hard to cope with cancer with help, I couldn't imagine without it. It was wonderful for me, I was crying (I'm not a crier either) and feeling sorry for myself a lot before letting them put me on an antidepressant. Let me know if you have any questions or anything. 

FIGHT ON!

Hey Mikey,

Hang in there, buddy.  You know about the lung met and the other body aches could well be the effects of some of the  therapies you’ve had.  As others have suggested, write down those symptoms, discuss them with your new Onc and see what the game plan is after the discussion.  You know we’re all part of team Mike!

All the best,

Stan 

Our disease is pretty good at bringing on the dark. Along with the others here, I hope your Monday doc will have suggestions to get you some relief. I'm a newbie with Nivo, so don't yet have experience to share, except this small post-op one: I was sick with nausea for two days after my first surgery; before the second surgery, I mentioned this to every nurse/doctor/floor mopper who came within ten feet of my hospital bed and the result was a medication that completely prevented nausea and made my recovery much, much easier. So yes, write it all down and speak up. We're all pulling for you!

Mike, the designated cheerer upper and welcomer, my heart hurts for you. But folks have given you great ideas, and your new doctor may open up new treatments, including for side effects, that will have you feeling better soon. Do complain openly and clearly – it’s part of advocating for yourself like you would for anyone else, and a new doc  won’t know you to notice changes in mood that indicate changes in how you feel. 

Hang in there, DM.

Beth

Hi Mike

Sorry you not feeling so great – hope it was not the spammers who got to you!

I have been lucky since have not had too many side effects – just fatigue and skin rashes (light, they have gone) and body ache (i tried to take statin for my cholesterol and that didnt work with the keytruda). I have had bad liver numbers and then they just put me on prednisone / steroids but with the idea of phasing them off. So I cannot give you as good advice as the others here.

But I do hope your appointment Monday goes well. I also encourage you to make an appointment with Dr. Hamid. Yes I checked the map of LA and Riverside is pretty far away (sorry) and especially with the traffic, but I am thinking you may need some imaginative treatments now, maybe surgery if that can fix your lungs (am hoping the reading is wrong) and then a clinical trial. If you can see him, then Hamid (or Ribas at UCLA) would be plugged in to the very latest treatments. For me TVEC seems to be working, I dont think it can deal with your lung met, but who knows? I was a slow non responder with keytruda (it did dissolve one of the mets not the other which confused me!) but TVEC made a difference. So its possible adding something else can make a difference.

So, hope you are feeling better now, good luck Monday, and do try to see one of the bigshots if you can. My wife was the one to make me get a second opinion and, while her advice on much of my illness has not been great, that was good advice as it made me and my doctor reconsider options. So I am hoping you will do the same, even though its probably difficult to do so.

Hope your cat is fine, but the full Mike is good to see you too

take care Mark

Hi there Mike!  I saw u on FB today!  Hang in there,  we are cheering for you now!  Hoping you have some great updates for us after your Monday appt.  You got this.  Thanks for all your encouragement! 

Hi Mike, Hang in there… it sounds rough right now, but glad to hear you are seeking another opinion since it sounds like there may be other options – including for managing these other pains. Reading your support for others and also all the support on this board for you is heartening. Sending positive thoughts for you especially today and tomorrow. – Kelly

Hi Mike! 

Sorry about your sinus pain, but on the bright side better from a sinus infection than a brain tumor!! I looked at your post regarding your scan results- all stable except for the lung! And no new spots! I am glad you are getting a second opinion for your plan on treatment and that nothing new showed up!

Hi Mike- one more thought on pain control…you might want to try an alternative to Naproxen. My husband’s palliative care doc told him that the effectiveness of different NSAIDs can vary person to person and has prescribed 75 mg Indomethacin Extended Release 2xday. It’s a prescription dose and the Ext Release formula gets him a consistent dose all day/night. Might help keep your pain/joint inflammation at a consistent level – it’s harder to get pain under control once its reached a peak level. 

Ann