Need some good vibes❤️

[KLCTJC]

I just need some good vibes. Feel like my last hurdle before I can breathe is tomorrow. I go back to MD Anderson. I am hoping for good labs and another see you in a year. Because I get so nervous I did some labs Monday at my office, HCT 38, WBCs 2.8, Neut 1.9, PLTs 152. I am actually hoping they may reduce my dose of Besremi even though I feel good. I am hoping my labs look the same but I swear things go crazy when I go to Houston! Hope everyone is having a blessed week! Had a rough day yesterday at work.😫. Crazy how one thing affects your whole day, but starting fresh today and refocusing on what really matters!! Prayers and good wishes to everyone!!!

[hunter5582]

Those numbers look really good. A dose reductions seems reasonable. Hope your visit on Houston goes well.

[GardNerd]

Sending you good vibes for your MD Anderson visit!! You're in great hands there. I could definitely see an argument for going down by 50 or so with those numbers.

[KLCTJC in reply to GardNerd]

I sent a copy of my labs yesterday to my local oncologist. He just called me this morning already talking about reduction, but wants to see what MD Anderson thinks, like either cutting dose or cutting back to once a month. So, will see. Either way I was thrilled.

[PhysAssist in reply to KLCTJC]

Hi KLCTJC,

Please make sure that you take a copy of [not just the most recent, but at least several iterations of] your labs with you, in case they don't get them through their system by the time you get there. [Or make sure to have access to them on your electronic device of choice.]

At my MPN specialist's office [@ Roswell Park in Buffalo, NY] they frequently don't have the most recent several sets of my labs because my bloodwork gets done at my local health system and it takes Roswell forever to add them to their system, so we pretty much routinely look at the "MyChart" app on my cell which accesses the results from my local system .

Finally, I'm compelled to ask- why are you even thinking about decreasing your Besremi dosage?

If it were me, given the excellent results showing you have achieved hematologic control, and at the same time remembering the surprisingly excellent results on your head CT [or was it an MRI?] re: your MS findings, I'd think twice about changing from what is working so apparently well.

If you were feeling poorly, or having any identifiable side-effects, then sure, decrease the dosage, but without any really good reason to do otherwise, why mess with success?

Best of everything, and remember, don't sweat the small stuff...

...and it's all small stuff!

PA.

[KLCTJC in reply to PhysAssist]

I have gone back and forth on the thought of the decrease. I think my vote is once a month dosing which is indicated after a year of CHR. I think local oncologist got a little worried because of the platelets, but as we all know in a month things can look different. I am open to whatever they recommend but I still have to keep the MS in the back of my mind too. Today the labs maybe a little different in the opposite way and she may say “why rock the boat!” And give me parameters for what to do moving forward. I think like everything in medicine this will be trial and error which we both know all to well. Will be interesting. My labs are at 3pm….and I see her at 4. Not too much longer!😊

[PhysAssist in reply to KLCTJC]

Hi KLCTJC,

You have to do what you feel [better yet think] works best for you, but all of this treatment of MPN's with INF is still novel and groundbreaking, and it's ever so much more so in your case with the co-morbidity of your MS adding to the uniqueness of your situation.

So, regardless of any guidelines, or even your MD's recommendations, you do you!

Good luck,

PA

[KLCTJC in reply to PhysAssist]

You are so right! I had to advocate to even take the drug. My gut has gotten me this far. Hopefully it will continue to point me in the right direction!

[PhysAssist in reply to KLCTJC]

Yes, yes, yes- my experience is the same!

Best,

PA

[Mishie14]

your attitude will serve you well! Good luck.

[Mostew]

Let us know how your appointment goes. Hope it goes well

[Spanelmad]

Great numbers, take it easy with the travelling or your hit the fatigue wall.I'm sure all will go well and your dosage will be reduced.Don't forget have some fun while your there!!

[KLCTJC in reply to Spanelmad]

Making my restaurant plans tonight! Definitely a highlight of going to Houston!

[Spanelmad in reply to KLCTJC]

Sounds like a plan!! Just had an appointment at Guys and had a sunny afternoon on the South Bank

[Chicagopv]

best of luck to you—

[lizzziep]

Hope all goes well! 🤞

[Carol0925]

Sending positive vibes and hope all goes well 🤞🤞 You Got This !

[RoundTheWorld]

Good luck - and enjoy the restaurant

[Mortysdad]

Love your attitude. It will serve you well. Let us know how you make out. Oh, and don't forget a bit of dessert 🍪!

[Exeter21]

Hope all goes good. We all similar I am very anxious always before my check up . But there is excellent work on our MPNs being done thankfully 🤩👍

[KLCTJC in reply to Exeter21]

You are so right. So grateful for the treatment. Thank you

[SarahPV]

thinking of you 🥰

[azaelea]

Sending good wishes ! Hope all goes very well! 🥰🥰

[Strumin210]

Sending blessings from Dothan Alabama. I to need good vibes. Had lab work done Monday, now I have to see a Rheumatoid Doctor due to a positive anti nuclear test. Could be nothing, who knows. Hope all goes well for you at the Doctor's office. Peace in your heart.

[KLCTJC in reply to Strumin210]

Will be sending good vibes your way Monday! Will keep you in my prayers! Hopefully it is nothing. If you don’t have any other symptoms it is probably fine. Positive ANA just opens the door to investigate but doesn’t mean they will find anything. And Rheumatologists are great at running lots of labs. 😆. Will keep you in my thoughts ❤️

[ainslie]

I wouldn’t worry too much about the counts you get at MDA, labs vary quite a lot, I get my labs done in the UK NHS system usually every month or so, they are pretty even always, when I went to Mount Sinai they were quite different ., mostly less, they did take about a dozen tubes of blood for tests so that can also affect the readings. Your counts are good so again no need to worry. I found MDA a bit not so user friendly and when I was there I was waiting with some poor very sick looking people in wheelchairs and drips etc which with the best will in the world is not so calming. It’s only a day and I reminded myself I am lucky in comparison. More importantly MDA are pretty good. Keep cool and remember your counts are good so you’re probably doing very well big picture wise. Good luck for the visit.

[KLCTJC in reply to ainslie]

You are so right. No matter how you prepare yourself being there just makes you so nervous. That is why I told myself this time I was going prepared. Did “pre game” labs, saw pcp just for annual hello but BP was 114/70. They have threatened to send me to the ER at MDA because of my BP as I get nervous. Going to try my best. But you are so right the labs will vary, but not the big picture. Need to focus on the few questions I have and actually ask them. Going to take everyone’s advice, today is going to be a great day! Thank you for all the encouragement and positive words. Hope all is well with you!!!

[ainslie in reply to KLCTJC]

we all get a bit apprehensive, even waiting for lab results and I have had about about 170 labs done over 14 years, I record the consult on the phone, not a bad idea if excessively stressed you might forget what is said we miss half the information, often sounds quite different on playback. If all else fails you could ask your GP for a small dose of Diazapam or similar say 2.5 or 5mg and take it a few hours before consult

[hunter5582 in reply to KLCTJC]

My BP aways goes up when I see my cardiologist but not when I go for phlebotomies. My cardiologist says it is because I am a bit Type A and see it as a test I need to pass. Very smart doc that one! Do not sweat the labs. They go up. They go down. It is the trend over time that matters, not any one lab.

I go to every appointment with a written agenda and give the doc a copy. You may have seen this before, but here it is again just in case you would like it.

Treatment goals:

Define for your doctor what your priorities are. Can be very specific at times.

Treatment Approach

Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers about all the interventions you use.

Updates/Issues/Questions

Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment.

Treatment

Review all treatment options – let the doc know what you are doing now and seek input about what to do next. Ask about ALL options, not just the one the doc recommends. Ask the doctor why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your risk tolerance and what risks you prefer to take to achieve your treatment goals.

[KLCTJC in reply to hunter5582]

I am in the type A group! Your doctor literally put it exactly how I feel. And it is a “test” I can’t study for! So I over analyze everything, trying to predict my future! Today I am going to try and let it go. And actually ask questions and try not to ramble. I feel the more prepared today than I ever had. Clear headed. I appreciate all of these kind words and excellent advice! This site has been a god sent! Thank you!

[hunter5582 in reply to KLCTJC]

It is much easier to say "take a chill pill" than it is to do it for us Type A's. I sometimes use a Qigong breathing exercise to lower my BP.

Giving the doc a written list of questions along with updates is more efficient for both of us. I forget questions all the time, hence having a written list. I highlight the things I want to be sure to address. My docs all like the approach as it helps them when I am organized.

Hope you have a great visit.

PS - was recently at a conference in San Antonio. Stayed down on the Riverwalk. It was great!

[KLCTJC in reply to hunter5582]

Trying my best to calm myself. I am a weird ritualistic person.😆. But today I told myself a little change is a positive. My normal lab here is closed! Now on the second floor. Going to smile and just try to breathe!

San Antonio is awesome! Best Mexican food!!!!

[Pogm]

Sounds like you're in good hands with your care and that alone should make you breathe easier! Have fun in Houston. Would love to see Texas! Best wishes. Be proactive and a reduction in med seems reasonable.

[KLCTJC in reply to Pogm]

Lived in Texas my whole life and I never see myself leaving!! There is so much of Texas to see! You should plan to come to the lone star state!❤️. Thank you for the well wishes

[DiveGoddess]

Sending you good Vibes! 😎

[nightshadow]

good luck, good luck good luck!

[Meatloaf9]

Good luck to you, MDA is as good as it gets, you will be fine. Best always

[Ovidess]

Hi there! I've been on a mere 50 mcg of Besremi for a few months, and though my HCT edged up (still under 45) and my platelets peeked over the 400 range again, the oncologist said I could stay at the low dosage because my body is pretty sensitive the Bes, for better and for worse. I'm pretty low energy, but then some summer heat is starting up. I have not had bone pain for many months. (Had a taste of that while dosage of 100 was going for a long while.) Good luck with your appointment and choices.

[KLCTJC in reply to Ovidess]

Thanks! I have done so well on the 225mcg dosing since end of September. I am thinking the med has just settled in. I feel great so I am so lucky! To be honest the last 6 mos I finally feel like myself again. Thanks for the well wishes. Just ready for it to be over and start the weekend and the summer! Appointments like this loom over us til they are done! So grateful for all the well wishes, truly gets me in a positive head space before the appointment!

[LFCLove]

Sending you all positive vibes from across the pond.🌈🤩

🤓

[LIGEBA]

Hoping everything went well yesterday.