SandiA

I removed restrictions on My Facebook allowing anyone to ''Friend'' request me! are there any restrictions on yours?

Hey SandiA, been a long time since I've been on this site but you were so comforting having someone to talk too and just wanted to mention that I'm coming close to the End of my Year long therapy (still Alive) (two sessions/2-months to go) Opdivo Immunotherapy which gave me type-1 Diabetes (insulin Pump/Blood Glucose sensor/transmitter attached 24/7, my Endocronoligist can track me online for Insulin adjustments Wow, Technology ...) And now I'm getting hit with Heavy Nausea/Vomiting for 4-5 weeks now,Not-Working, No appetite/Thirst, metallic taste in mouth and Much weight lost, feel like I'm losing this battle as when I force myself to eat at least 1-serv. portion I also have to inject Insulin for those carbs, If I loose those Carbs(vomit), I have to find a way to replace those Carbs to Balance Insulin to prevent Hypoglycimic CRASH which could kill me, Coma etc..., Oncologist has prescribe a few Nausea/vomit Medications and NONE working, just did MRI-Brain Scan(contrast/non-contrast), Chest X-ray for past/recent heavy Chest cold/congestion So far MRI Scans,X-ray clear...thank Jesus and just did BloodWork for Cat-Scan this.Fri. morn. as Dr. says PET -Scan (due in June anyway) takes too long to Schedule as trying to figure out illness? I'm seeing you're having problems of your own and praying for you right now! take care of yourself and thanx again for being there for people like me, you are loved and appreciated!! God Bless You!

Hey SandiA,It's Mark again and depressed-Ugh! I'm 2-months finish/last Opdivo but still feeding Intravenous TPN-nutrition bag home now but was(Gastritis-2-week hospital) still trying to beat the Nausea , little/no appetite and No taste buds, how long did yours stay turned off?

tomorrow going to try figuring out how to upload a photo of me onto my computer from my phone then upload to this site but I am TECH. challenged, lol! or hey, you're welcome to look me up on Facebook? Mark Newman (full face photo wearing a straw Beach hat) but maybe difficult to find me ??

Hey SandiA! just wanted to stop by your wall letting you know my health has improved, very slowly (week-to-week) but I'm able to taste food again and my Nausea has become farther apart, less frequent and weaker which is why I think taste buds coming back and as long as I sit still and relax after my meals giving time to digest I've not Vomited for a while. I'm still taking blood thinners , Prilosec (double dose, twice a day) until told not to but my skin scratches and bleeds easily -ugh! Appointment with my G.I. (gastro-intestinal) Dr. on 13th this month and not sure what to expect and Also MRI- full body Scan on 22nd Which honestly is causing me Anxiety and also my Diabetes making things complicated as my Sugars are going kinda haywire and my Endocrinologist has been off past few days and can only MRI-scan when sugars within 70-200 with hasn't been happening lately at the 7:am appointment time I have set. Type-1 Diabetes has my life complicating and completely changed my lifestyle as it now dictates my feeding habits, activities etc... basically putting me in a box and Praying Hard for Jesus to heal me as I used to be so active and spontaneous as I'm naturally hyper etc... but now...restless, stressed, depressed as I still tire very easy, I've started resistance training again (weight lifting) but Wow, still weak and have only gained a couple of pounds in body weight now weighing 160lbs. but should be bout 185lbs. with what used to be my musculature and I started this whole Cancer thing at 207lbs. but fit and very active and getting late for me now but again want to very much say how very glad to have You to whine and complain too! love you for that!!!!!! I wanna Pray for Health and Recovery for You and I in that it be a part of Gods Will in Jesus name---AMEN!!

Hey SandiA, I just got out of a 2-week Hospital stay out of work 5 weeks now as Auto immune now along with type-1 diabetes also caused Gastritis preventing me from Eating/drinking causing Nausea/vomiting.Good news is doing many scans, camera down throat twice now with biopsy showing clear for stomach Cancer along with Brain scan clear as well PET scan still due in June as Dr. stopped and Cancelled further Immunotherapy Opdivo sessions being I've done 11 out of 12-13? once a month sessions and now doing more harm than good because also had a PICC-Line placed for a TPN bag for my nutrition but Arm became swollen, leaking after just two days sending me into E.R. were they found blood clot affecting 3-veins and removed PICC-Line and replaced with temp. regular infusion I.V. type set (not efficient for TPN-bag) until find PICC-Line Nurse to preform another install procedure (Specialty) -UGH! now taking steroid shots for stomach and blood thinning injections as well and still difficult to eat/drink but Nausea/Vomiting seems to be coming further apart but still Metallic taste in my mouth, everything taste dull etc...little appetite, Any ideas how long until taste comes back, lol?? and wow, them steroid shots are uncomfortable feeling Pins and Needles traveling heavily through the blood stream-eeeew-uck! Well anyway, just manage to squeeze in an appointment as Dr. order ''Stat'' for replacement Tue. morning 8:am but would be installed into Surgery Arm which she quickly hesitated first time making me wonder if can do now? So...Sugars also running high because of Steroids now, feeling weak, sickly with constant baseline queezyness and can't wait to get past this Chapter in my life but still Praying hard holding onto faith which has been difficult from time-to-time with even some bouts of anger with guilt following close behind. Hope all is improving for You saying Prayers !

SandiA, you mentioned in a post that you have some scans coming up on Thursday. Good luck to you! Please let us know how it goes.

SandiA, you mentioned in a post that you got the news that two lymph nodes are growing. I'm sorry to hear this. What's the next step? When will you have more info? Thinking of you.

hi. Could you post a photo of the oils you were told to pour over tablets? Or simply tell me the brand and name?

That doesnt make sense to me either.

Best wishes

Our new oncologist only gave these 3 options after CND. We asked if Meredith was her Dr. what would she prescribe? She has never directed us which way to go other than the tablets had horrific side effects and she would have better quality of life with opdivo...what do we know? based on the side effects and MD stating she has "never had a patient be able to handle 3-4 months of tablets." we chose opdivo. She is to start june 15, every other week, same day as my son's wle....a bit too much for this momma bear:( When Meredith told the Dr. she chose opdivo, the Dr. made her question her decision but ultimately said "either one is reasonable." We are VERY worried about your melanoma......I don't know what to think..

Hey Sandi...Okay So, to update my progress I've just finished My consultation with my Oncologist Explaining I'm Stage 3 rating- Clear Scans with a high risk of return and also finished my 'Immunoltherapy-Treatment-Orientation which basically explains that I'm a great candidate for a new Experimental FDA- approved Blood Infused Drug (forgot the name but oddly have heard it before, T.V.commercial??)=(I'll mention when I'm reminded) which unlike his other Patients I'll be the FIRST doing a once a month 1+hours? hours treatment for a Year (12-treatments?) instead of every 2-weeks with a quick overview of possible side affects etc...but so far no real issues reported!? I'll keep you informed, thanx again for letting me and others bend your Ear, oxox, lol!!

So Anyway just got home after spending the day in Nuclear Medicine after injecting me and tracking routes and pathways to lymph nodes etc...for an hour or so in the X-ray machine type contraption where they then Marked and identified locations etc...then onto Surgery for full Melanoma skin area and Lymph nodes removal removal and doing very well so far and just sent E-mail to Oncologist Dr. asking when and what I need to do for a Full Body type Exam to rule-out other suspicious (Everything Cancer to me now, lol!!) skin issues etc... : )

Hey, Sorry, long time No say anything (Kaiser WLA pushing me through very quickly) and...Continued Knee Surgery therapy but So far they've done the whole Melanoma Skin Area exision along with 3 Lymph nodes removed with One- Contaminated (Melanoma)(prompting full body and brain scan) Full Skin exam (Derm.) several Pre-Cancers Freeze-Burned , Full Body-Radioactive Sugar injection Pet-Scan and a Contrast & un-Contrast Brain Scan-MRI Now showing everything CLEAR!! Thank You JESUS for answering My Prayer! and Thank YOU Sandi for being their letting people like Me Bend Your ear and can't tell you how comforting it was for me!! : ) but still however; having to continue Oncology for follow up therapy etc...and regular every 4 month Derm. Check-up's until....??? (Find out more after Onc. appt.!?)

SandiA
I’m so sorry about your dog. Pets are so special.

Feeling better today as like at first getting into a Hot tub the water (of course) Hot (first hearing bad news) but eventually becoming warm with later actually ''feeling'' cooler, the water temp hasn't changed I've just become more used to it? and...becoming mentally fatigued from the worry so literally tired of worrying, ya know??

So anyway, Okay honestly thought I was going for surgery this morning...NOT! as it was Just a Surgical ''Consult'' and a chest X-ray , I only heard ''surgery'' (not consult, or maybe in my panic quite reasonable I just simply didn't hear that part as I was actually looking for something to write on and...feel kinda like Charlie brown listening to a teacher saying Wha.-Wha.-Whaaa,lol) from the nurse when given an appointment and didn't think anything of it as they just said larger area of skin removed and original Mole(Melanoma) only took 5 min. and they did it right away first visit, lol! Well anyway, sorry for the misinformation but as now explained it's Next week May 09, 8:30 Wednesday when he's going to remove a much larger piece than I thought and grab a couple? lymph Nodes to examine and get results maybe week or so later! UGH, I'm stupid, lol!!!

Last thing before I go in soon, Friends-tend to feel removing more area no big deal(I think to comfort me) but not sure they understand that this is the day that makes it all real, ''this is really happening and just the beginning ?'' Man...Am I being an excessive Wuss!???,lol!! and poor you putting up with me and sure many others you support !!

Going in this morning with wife and Son to keep me compony for further removal but just wanted to mention and reminded yesterday through a friend having me re-reading report that stated ''AT LEAST Clark Level 4'' (gee thanks for that J.J.!) not that it makes any difference though and talked to my Pastor yesterday which wow, really gave me comfort at the time and felt better for most part of the day but still Praying ''through My Faith in Jesus I'll be healed!" and today Step -1, full mole area removal! I know just larger removal but just the state of consistent fear of how far has it spread (as I've had this mole for couple years) that I've NEVER felt before in my life and believe me Where I grew up and other situations I've gone through were I should be dead and the emotional walls that I've truly built up in my life (Cry challenged, even when my Mother past away just a short outburst in private then not again with guilt for not being more emotional but used to people, friends, family that had already died in my life etc.. can only make me feel for those far more emotionally sensitive than I and the true Hell THEY maybe be going through as I've now had several uncontrollable emotional events but ya know I think the ones who appear more emotionally weaker are truly the ones with the Most strength at the crucial times where I'm more like the bully with a more outwardly strength that's just over compensating for the true emotional vulnerability(now discovering) as I'm now dealing with emotions not used to dealing with other than maybe my childhood which I've probably mentally blocked out!? Anyway, I'm SOooo sorry for rambling, Writing to You just seems to help me cope, Ive kinda become a person I don't recognize at the moment but maybe It's a begining for a new improved me!?

Sorry for the grammar as I wrote in a hurry and didn't proof read finding mistakes but I'm sure you've reasoned them out, lol!!

Just wanted to leave a note that I watched your vid's and thought well done, your awesome and your strength only encourages a more positive outlook and strength from myself, thank you!

Hello Sandi, I'm still in shock,Panic,Scared to death mode as I really thought simple mole being removed until just yesterday ''Clark level 4'' and how will this affect my job, family my life, did it spread? , survival rate for this etc...? I'm simply very scared at the moment!

Hi SandiA - you have a similar diagnosis as me and I'm wondering what you have done with your diet since being diagnosed. There is so much contradictory info out there, but I still want to do as much as I possibly can to strengthen my body through nutrition. It looks like the gold standard in treatment is Novolumed and Ipi, or perhaps Keytruda, and I anticipate starting treatment within 30 days. Any advice you can give would be much appreciated.

So glad to have learned you are now a four year Stage IV metastatic melanoma survivor. I was recently diagnosed Stage IV also and just completed my fourth infusion of Keytruda (immuno-therapy drug) with my set of CT/MRI scans scheduled in three weeks -- and I am so filled with anxiety, especially in that as of date I have not had any side effects at all from the drug, so have no idea even if it is working., Knowing that you also were similarly diagnosed and have successfully fought the battle gives me some encouragement, as I know I have a long road ahead of me. Keep the faith

You will be on the cover of our Newsletter today!

Hi Sandi, we are just checking to see how you're doing these days?

Do you have electricity yet? I am so worried I see on the weather page that another storm is headed for the East Coast hopefully this one will not be as severe

Thanks for participating in the conversations and adding your own experiences and point of view. Your input will help many others just to be able to read about it. We appreciate you being here and helping others!

SandiA, you mentioned in a post that you lost your brother a month ago. I just wanted to say that I'm very sorry. I'm sending prayers and hugs to you.

Hi SandiA, My husband was just told this morning that he has melanoma on his chest. Squamous on his arm. Was hoping you could provide me with questions for the physician/surgeon. Surgery is Tuesday so I know we will not know anything definite until then. The mass is 1.3 ml in depth. What would constitute a BRAF test? We are not worried yet but I am the one who does all the research. I am breast cancer free 3 yrs now and know what it is like to hear the news. Thank you in advance.

SandiA

Thank you so much for the info you sent Banditwalker - I'm the one going under the knife tomorrow and our dermatalogist isn't real quick when it comes to answering questions - thankyou again and we will keep in touch

Benzoid