The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,230. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
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    Thank-you, Patti for that site--I needed it! I don't know how to cut and paste (still!) and my husband has refused to SHOW me yet again how to do it! I'm so bad on p/c's! Anyway, thanks for that site.....love and hugs and many blessings, mimi

  • 1,231. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
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    Miss Mimi: Your very welcome!  You didn't say if you've started the Jakafi yet?  I know you had been trying to reach your Dr last week, so was just wondering and worrying about you.

    My best to everyone: 

    Patti

  • 1,232. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    Hello my darlin' Patti,

         Well, the spleen pain subsided and is behaving quite well for the past several days. I never did get in touch with my nurse to tell her abt the spleen acting up--I was going to ask her to ask doc if I could up my dose of HU from 500 to 1000 mg's daily. Since I was unable to reach the nurse, I upped my dose on my own. Took 1000 mg's for 3 nights in a row. I know it does help me--whereas HU doesn't do squat for Dee, HU does well for me, and that has quelled the spleen for now. I think that doc is waiting for symptoms to get worse so he can start me on the JAK med. He seems to be concerned with the toxicity of ruxo with me--I'll have to question him in regard to that. So, no, not as yet--I haven't started it. My next appt is May 23rd and I will see what goes down then. I'm game for whatever he wants me to do. I know my spleen is on the move again--it's obvious by the spasms and contractions starting up just recently, so it's an active volcano again! I like where DEE named her spleen Gertiie! I'll have to name mine as well. But, you know, since I responded so well to the month of 1000 mg's HU back in Jan (or Dec), he may well choose to try that again on me. It did shrink the spleen all the way back over to the left and up by the rib cage, and the JAK drug works on the symptoms as well, doesn't slow the progression of MF--it may be alright for me to stay on 1000 HU and see how that goes. I don't know? Like I say, I will leave it up to the doc and the head of hematology.

         Wow! Patti, did I ever catch up on my sleep over the weekend! I slept all day Fri, Sat and Sun without any sleeping aids--whenever I woke up I'd grab a yogurt from the fridge and eat it in bed, then roll over and nod off again! But my ankles were real swollen so I did need to stay off my feet. Ankles are fine and healthy now. I wasn't able to sleep Sun night, but stayed in bed anyway--I watched a bunch of god movies and finally dozed off to sleep at 7 AM!! Then woke up abt 11, and I started out real raring to go. I enjoyed all that sleep. Wish your sleeping habits would improve--I know how miserable it is to NOT sleep--bummer.

         I briefly read thru all the posts, and Peg, I'm sorry you are so drained and wish you a big positive cloud burst of energy! Soon school will be out and you will be able to get more rest.

         DEE: I finally got registered properly with 23andme and they are mailing my kit to me soon. Thanks for all your wise help on that. Know how much I do appreciate your help always.

         Sarah, Wee P , Neil, Linda and all the others--my mind is failing me now--hope you're all doing the best you can and receiving the best treatment from your doc.

         Love, hugs and blessings to all.............mimi

  • 1,233. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Good for you Mimi ..you will enjoy all the info.My ONC nurse called and my jakafi will be going through the drug store ..HOWEVER.Its still 4k my cost !!!! So she said to tell CVS to put it on hold for now.But according to most drug assistance web sites 2 person household has to be below 29 k.Sooooo anyone have any ideas what to do next?????I,m searching and emailing just about every place but its not looking good.Even if i buy the first month he months after that will be hundreds.So any one out there with the above 30k a year household and has been through this i would really appreciate it. Huggers=D Maybe this is a bad idea .....See if i can get any responses.

  • 1,234. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
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    Dee, i just happened to log on right now and read your post. I am so shocked and so sorry to hear the news on the cost of the Jakafi!!! that is insane!! I so wished i knew something.... but i will research and see if i see anything at all on this. I know that States may differ as well on the help there is out there. but.... there Must be something!!!  No one at all should be made to pay that kind of money for a med that is desperately needed! Ins. company's can be so cruel!  I am going to be praying and researching......... hang in there my dear friend! there has to be something. I'm sure others will help try to find Something out there to help. I am praying for you ......... 

  • 1,235. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    pegetha Registered Users
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    Dee, have you tried calling Incyte (the Jakafi manufacturer) direct?  That's how I started out.  I am at work right now, and don't have the phone number handy, but I'll email it to you when I get home.  The lady I talked to at the Incyte Patient Assistance program was very very helpful.  Perhaps someone there could offer a suggestion.  It's definitely worth a try.

     

    Another option that would help a little would be to contact the Patient Access Network (panfoundation.org), or call them at 866-316-PANF (7263).  They have a fund set up to help with the copay for people who have insurance, and their guidelines specify that your income can be no more than 500% of the 2011 national poverty guideline, which for a family of two would be $14,710.  The only problem is that the maximum they will grant is $7,500/year, but I would think that every little bit would help. 

     

    I'll look through my notes when I get home, and see what else I have.  Meantime, lunch break is over and my students are coming back, so must run . . .

     

    Ciao,

    Pegetha

  • 1,236. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Thanks so much everyone but i did fill out the incyte application and dropped it off to the ONC nurse.She will fill out there part and fax it for me.If this does,nt pan out then i,m not going to be shook about it.I will talk to doc aboutThalidomide.So all is not lost.We,ll see how this pans out .Thanks everyone for all the help.Huggers=D

  • 1,237. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
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    Hi all,  Hope you are feeling not too badly.  I am doing alright.  holding my own.  the meds make me very tired,  but I tell myself it could be worse.  does anyone know if it would be okay to stop the avalide and HU for a couple days and then go right back on it, say on Monday?  We're hosting a party this weekend ( 60 people).  Yes, u read it correctly.  when we started our invite list it was going to be small, but it grew.  I don't know if the side effects ( in my case are exhaustion starting around 4 o'clock every day)  are cumulative or not.  and I don't know if I can just stop like that.  I really need to be okay for this entire weekend.  Any help or suggestions would be so appreciated.  And, yes, to answer your questions in advance - we sent out invitations before I knew I had PV.  thanks, and everyone, hang in there.  Love to all,  Carol

  • 1,238. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Hi Carol...The battle of the fatigue!!!.I have to admit of dabbling with dosages for many reasons.Hu and skipping it for a few days would all depend on were your counts are at.I have skipped days and started up with no issue but thats me.As far as the avalide that also depends on your situation.If your body tends to hold fluids fast then maybe a lower dose.Either cut the pill or empty the capsule a bit.This needs to be your call.But will it help the fatigue ?Don, t know.What time do you take your pills ?When you stated crashing at 4pm i related.Every morning at 9am i just about nod out.So i make sure to lay down even for 30 mins to recharge.So i guess i was,nt much help.Try getting  naps in around 4 pm if possible.Good luck and have a great time...Coffee is on if that would help

  • 1,239. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    ps after another cup of coffee ..realizing i should,nt reply before waking i would.nt skip the avalide.Must be for blood pressure as well as fluid.Don,t want to make a bad siuation worse.The hu is more flexable but the results will probably not be what your looking for.Try to nap and drink alot of fluids and tons of coffee just before the guests arrive.I,m sure once you get going you,ll do fine .Happy party.Try to nap at 4pm every day if possible we have to listen to our bodies .

  • 1,240. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Natalie5 Registered Users
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    Dee.. I'm sorry that the Jakafi is so expensive. I wish I had an answer for you. I hope that you are able to find an answer soon, and that you can start the Jakafi.

    Carol.. I agree with Dee about the Hydrea. It depends on what your counts are and how you respond to it, as to whether you can stop for a couple days. I am very sensitive to HU, and one or two pills a week can drive my platelets up a couple hundred thousand. But I know what it is like to be tired, so it's your choice. Personally, when I have zero energy, I have a great big wheatgrass shot, or fix a smoothie with lots of fruits and spinach or kale.  Maybe it's in my mind, but I feel better.

    So, I got my first Pegasys injection yesterday. I fully expected to have horrible side effects, but I am happy to say I only had the aches and fever! At least I didnt have the headache and nausea! I think because dr Mesa wanted me to start on a low dose, the side effects weren't bad. I'm still on the HU and agrylin for now. But I feel really good today!

    Hope everyone has a great weekend!!!

    Natalie

  • 1,241. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
    Currently Being Moderated

    Hi Natalie,  Hi Dee,  I am astounded at how much the jakafi costs.  they talk in terms of $7,000 per month.  ouch!  That is ridiculous.  I read that the company said they will provide it free to uninsured people and will help with the co-pay to those who need financial assistance.  maybe you can explore that further.   I really don't have any idea how those things work as I am in Canada, where our Medicare system is so different from that in the States.    I get soooo tired and I know it is from the HU.  and I get all light headed as if I will faint.  .  Unfortunately I don't know what my counts look like now.  (too bad they don't have a home system so we could check it ourselves.).  I called my haem/onc yesterday (can't believe how fast he returned my call) and he told me I can stop the HU and the avalide for three days but to make sure I start again on Monday.   I only see him at the very end of May but he seemed confident that I will be okay, so I am just going to put my trust in him.  So I didn't take anything this morning and it didn't make a bit of difference in how I was feeling.   Hopefully tomorrow will be better.    What is a wheatgrass shot?  Somehow the smoothie sounds better.    thanks Nat and Dee for all your help and info.  I guess eventually I'll learn more about all the blood stuff - counts, kinds, good, bad, what makes me feel better, worse, etc.  I guess I am stuck with this for life, huh!!!  Funny how, before I knew I had PCV I felt wonderful.  Never dreamt in a million years that anything was wrong.  Wish me luck.  We are having 60 people tomorrow night for my husbands 70th.  God that sounds so old.  But he acts so young.  Tennis a few nights a week,  working full time and loving it.  hard to believe.  time goes so fast.  just be thankful for every day we have.  hope you have a good weekend.   Carol

  • 1,242. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    Hey Carol,

         I'm mimi from southeast Louisiana. it's nice to meet you and this is a great group of supporting and caring folks. I just wanted to add real quick here that I am uninsured and indigent--seen at the charity hopt here. I did receive the Ruxo at no cost to me thru the social worker and doctor at my clinic. DEE is between a rock and a hard place simply because she is insured. It's like punishing her for being prudent and having good health insurance and it makes me livid. Our health care system is very flawed and there should be some program available for her and others in her same position to be able to get the med at a decent and affordable price. It's the med she NEEDS. It makes me crazy with anger abt all this stuff.

         Anyway, I'll get off my soapbox now and wish everyone well....love to all, mimi

  • 1,243. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

      Carol are you on aspirin ?If the symptoms do not stop press your doc to do another cbc.Please let us know what you counts are after.Also do you see a cardiologist seeing your on a heart med ?Take care and have fun .I,m sure you will but also be glad when the party is over .Also Jakafi is,nt a cure its to help symptoms.There is an issue with suddenly stoppng it and also after long term some symptoms return.However in that time spleen enlargement and pain as well as bone pain are reduced greatly.I,m down to $3914 for 3months.Need to finish up with INCYTE to see if they can get it down more..Nothing ventured nothing gained.I,m middle class and insured so the help is,nt as available.I have filled out and have been denied from differant disease funds.Its all good we,ll see how this plays out.Happy Bday to your husband.Tata Huggers=D

  • 1,244. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Hello Everyone: Well, after 4 days of driving we have finally arrived back in Wyoming again!!!  We are by Yellowstone and Grand Teton National parks. We lived here many years ago, so after 11 years of being away, we are finally Home again! I hope this finds everyone doing well. Just wanted to give you an update.

    Hug's to everyone, Patti

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