› Forums › General Melanoma Community › Update from Hawaii
- This topic has 10 replies, 5 voices, and was last updated 6 years, 10 months ago by
RitysMom.
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- June 24, 2017 at 10:44 pm
My last post was on 6/8 when we found out Kristine has mets in her spine. The last couple weeks have seemed to fly by while also going in slow motion…it's a very odd feeling. I flew out to her in AL on 6/9, by then she had had a high dose of radiation on one of the tumors in her spine, but still had no functionality from the waist down. Her husband and I spent some time with a home health nurse and learned how to care for her, we then decided to continue with our travel plans.
I had contacted a few drs in the Los Angeles area and Dr. Chang from USC and Dr. Hamid from The Angeles Clinic both wanted to see her. Dr. Hamid was in contact with her dr at MDA, Dr. Tawbi, and said they were both in agreement to get her started on ipi/nivo before we went to Hawaii even tho she's still on 4mg/day of dex.
We flew from Pensacola to LAX on 6/13 and it was a nightmare, Kristine was bruised by the end of the trip after all the transfers by inexperienced employees. We also had a Southwest Airlines pilot who told us that 'life isn't fair' when I complained about yet another indignity that my sweet girl had to endure. I almost got kicked off the plane when I responded to him. Really? We don't know by now that life isn't fair??
After arriving at LAX, we made our way to The Angeles Clinic for an appt with Dr. Hamid. He scheduled her to have her first ipi/nivo treatment that Friday, 6/16. We decided to cancel with Dr. Chang due to how exhausted she was. Dr. Hamid also did a brain MRI and CT of the body. The brain still had numerous brain mets, but she only finished WBRT in 5/24, so we still may see a response to that. Her body had one lesion on the lungs.
Her treatment on 6/16 went smoothly. We flew to Hawaii on 6/20. She has had no improvement in mobility and has deteriorated in some ways. During transfers from wheelchair to car or bed, she sometimes loses consciousness if her head goes back too far. It usually only lasts a few seconds, but yesterday was a long one. My son-in-law called Dr. Hamid and he upped her steroid to 8mg/day. She also seems extremely fatigued, like falling asleep as she's sitting up. And she was vomiting yesterday.
My fear right now is that we're at the end. I'm worried she won't be able to get the 2nd dose of ipi/nivo due to the increase of steroids.
She's been spending her days here in Hawaii sitting on the back patio watching the waves and embroidering when she's not dozing. She hasn't felt up to going anywhere after the first day. I want to do whatever I can to make this trip enjoyable and memorable for her and the whole family.
I don't know if I have questions or just need to hear other experiences. I'm just feeling lost.
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- June 24, 2017 at 11:35 pm
I'm sorry to hear how Kristine is deteriorating. What did the Dr say about the vomiting? I had some vomiting from Ipi/Nivo combo after the second infusion due to liver complications. I understand some folks can have side effects after only one dose although for me it was after the second. I was also very tired from the combo treatment. Sleeping almost all day. I also had some vomiting from dex post surgery. Not sure what the dose was though so don't know if that could be the source. I hope you are able to enjoy the vacation. Please keep us updated on how things go. Best wishes to you all.
Jennifer
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- June 24, 2017 at 11:55 pm
Yes the swelling. Makes sense. Hopefully it will go down soon.
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- June 25, 2017 at 6:01 am
I'm sorry you canceled the appointent with Dr. Chang (Dr. Eric Chang at USC?). If there was anyone I'd have had your daughter see it would have been him.
If Kristine gets back to LA make sure she see's him.
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- June 25, 2017 at 4:31 pm
Oh… I am so sorry to hear she is not feeling up to going out. Although relaxing and watching the ocean waves can also be a wonderful change of routine for awhile. I had an issue with one of my prior radiated brain lesions once I started on Keytruda. It is possible for swelling to occur… not only from the radiation treatment, but also the immuno response with the meds. Hopefully the Hawaiian atmosphere is providing her with some happiness and lower stress levels.
I second Anon's pat on the back for Dr. Chang. He's incredible. His bio reads like a "who's who" (technically, he IS a listed who's who! ha!)… but it makes no mention of his genuinely concerned nature or his excellent communication. He replied to my email on an Easter Sunday when I ended up in my local ER! I cannot speak highly enough of him. Your selection of him as the "radiation oncologist to see" while Kristine was in LA was an incredible choice for her… hopefully she will have the opportunity to get back to LA soon and feel up to an appointment with him.
You have been such a fantastic advocate for her. That is not an easy task, particularly with the added circumstance of distance. There should be awards for people like you.
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- June 27, 2017 at 5:57 am
Hi Cindy – I can imagine how you're feeling (all too well, like so many others) … but want you to know that a year ago my sister was in similar condition. I wondered several times if we were nearing the end … and she's still here, doing really well.
She finished WBR mid-June last year – 1st scan was in August and there was no change – 2nd scan was Nov. and there was huge change!! Also, WBR knocks the daylights out of you – the fatigue is far worse than they tell you. Nodding off while sitting, sometimes practically in mid-conversation, became quite normal. Moving around was difficult, she had barely any strength to walk, had to use wheelchairs and a walker.
She started nivo in July but there was a period of interruption in August because she was so weak (from WBR) and had wicked headaches/vomiting to the point where steroids and fluids were given thru IV at home (they put her steroids back up to 20 mgs. a day, 'til she was stable again.) I'm not sure of this but I believe I read somewhere that you can do up to 10 mgs. p/day while receiving immunotherapy (hopefully, someone will correct this if wrong). For additional energy, in Sept. she started taking Ritalin – it worked.
In Aug./Sept. she had marked weakness in her right leg (still does but it's much better) – had her first "drop attack" shortly after that … and both of us feared the worst – "lepto." In Nov., it did not help that her brain MRI showed a T1 flair hyperintensity right near the leptomeninges – I think I held my breath for weeks fearing anything that looked like "deterioration" …
For my sister, the spine mets came before the brain mets and one vertebrae had fractured – 6 weeks after spinal radiation for pain treatment, another vertebrae fractured during an episode of vomiting. One of those vertebrae has since totally collapsed, the other has partially collapsed.
Aside from the brain and spine, my sister had mets to other bones, lungs, liver, spleen, pancreas and omentum (she also had uterine tumours that they now believe were fibroids but they too "responded" to immunotherapy and are gone 🙂
Through all of this Cindy I can only say that I knew WBR worked for some and immunotherapy worked for some and that a synergistic effect (abscopal) was possible too – and I desperately needed these treatments to work for my sister!! They held a tiny glimmer of hope in the middle of a really poor prognosis and I clung to it!
I sincerely hope this helps you and that treatment is already working to help Kristine!! Sending a multitude of best thoughts and wishes out to you also. Take care!
Barb
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- June 27, 2017 at 6:05 am
P.S. Oops/forgot – the whole point in mentioning fractured and collapsed vertebrae is that, in my sister's case, it resulted in a great deal of spinal cord compression >> and that's just an "open season" for a myriad of new and weird back and mobility problems >> try not to be unnecessarily alarmed because even those things get better as well!! I so hope this is the case for Kristine!! 🙂
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