Ixempra!

diana50 · July 2015

so happy to hear hemoglobin is up and you are feeling better. Each day now the farther ️you get away from chemo the better you will feel. There stillay be done body aches.

Yes kelly rads is taking out the cAncer. I just know it is.

Spinal puncture for me tomorrow at hospital. Rule out cAncer in spinal fluid and put this head lesion to bed. Will help inking sure lesion is b9 mennigoma.

Chemo july 20.

️Hugs

Catesmom · July 2015

I'm glad the transfusion went well. Big difference in hgb!
Diana, I'll be thinking good thoughts for you today on the spinal puncture. Praying everything is benign. Kelly

Anonymous · July 2015

Diana, there's no cancer in your spinal fluid. I just feel it. Will you know right away?

Kelly, good to hear your 2nd WBR went well. Hope your 3rd one is equally uneventful.

Day 9 since infusion: feeling even better than yesterday!

Hugs,

Brenda

Catesmom · July 2015

Yay Brenda! I'm glad you're feeling better! Kelly

diana50 · July 2015

hi my fellow Lxempra travelers

Home from spinal tap. A bit of a headache. Laying low. Hopefully in 24 hours will be back to normal feisty self.

Brenda glad you are on the mend. It gets better farther you are out from infusion

Kelly. Keep on girl. Rads clearing up brain stuff. I know it. Rest.

Only sending hugs and comfort to you both

😎😎

Diana

Anonymous · July 2015

Dear Kelly and Diana,

Just checking in to see how you are both doing. Diana, hope the headaches are gone. Kelly, hope number 4 (or is it 5) went well!

Also letting you both know that Days 10 and 11 were better than I would ever have expected!!!

Hugs,

Brenda

Catesmom · July 2015

Hi Diana, hope you are feeling well and headache free. Brenda, I am so glad you are feeling better finally. It's almost like they give you an extra week so you won't stop the Ixempra! Well, I'm done with 5/10 now. 5 left to go, and have had no further problems.

So pretty much my whole family is going to come visit me from Michigan in the next 2 weeks, and will be staying with me. 8 people this weekend, and 4 the following weekend-which includes my mom. She is not the healthiest person to come to altitude to come visit, but that is why other family members will be with her. I know that seems like a lot of people all at once, but we can fit them in. I am looking forward to seeing them, and it makes more more sense to see them now than them coming for my funeral. Whenever that would be, but who knows? I feel sorry for my mom, she feels so helpless. Kelly

diana50 · July 2015

hi peeps

Well. I had a rough couple of days after the spinsl tap. when they say to stay flat on your back for 6-8 hours after they mean it. I paid the price for two days b/c I was too active day of procedure. Today first day I could be upright and move around. Worst headache ever. What we go through and still keep on amazing to me.

Brenda. Glad you are healing and feel better. Now you kinda know what to expect and how yo take care of yourself after infusion.

Kelly. Great family is coming. Relax and enjoy the visit. Your mom is feeling so helpless like you said. She wants to make everything better but she can't. Michigan is a long way and happy you get the visit. I still think the rads will take care of your head and the Lxempra will do the rest.

Chemo for me Monday. Then hopefully I can get on a plane August 6-9 and visit family in iowa.

Ok lxempra fellow travelers. Hang in and remember how strong you are even on the really hard days.

Anonymous · July 2015

Kelly, like you I also truly enjoy visits from friends and family members. I like a few people at a time, though! Wow, you have them all staying at your house. I hope you will get some kind of help with prep work, cleaning and stuff. Sounds like it will be a lot of fun!!!

Diana, I don't remember what the spinal tap was for. Whatever it was I hope the result was to your liking in spite of headaches which will eventually go away.

Day 13 was very nice. I got to grocery-shop and cook my family's favorite dish!

Love and hugs,

Brenda

diana50 · July 2015

hi Lxempra peeps

The spinal tap was to rule out mets to spinal fluid and brain. 4 cm lesion in dura and initially thought cAncer. After a 2 month repeat mri looked more like b9 mennigoma. But wanted to go spinal tap to look at values and pathology. Wish I would have said NO but was scared and wanted more info. Still dealing with spinal headache.

Lxempra # 4 today. Hoping steriod will help spinal headache. But I know what's coming in about 4-5 days. 😖😖😖😖.

Glad you are feeling so much better brenda Kelly hang in. Get done with killing cAncer in your noggin. Family time. They want to see you and hang out.

Take care and keep posting.

Catesmom · July 2015

Hi Ixempra gals!

Brenda, I am so glad you're feeling good again. It makes such a difference! Isn't it surprising how something as simple as getting groceries can make you feel a little more normal.

Diana, when will you find out the spinal tap results? I am hoping and praying all is benign.

Yeah, I am looking forward to seeing everyone. 8 people this weekend, 6 the next. They all understand that if I am tired I will sleep. I trust everyone will help with the housework. I mostly have things picked up, and hopefully it will stay this way. My daughter,7, has been planning where everyone will sleep. She and her cousins are going to sleep n the floor. Campout style. She loves that. Plus she is such a planner.

Number 6/10 WBR today, seeing the light at the end of the tunnel. Take care all!! Kelly

Anonymous · July 2015

Kelly, I can actually visualize the radiation rays zapping the little beasts into oblivion! Get all the rest you need, with or without people around you. I bet you would have too much fun to be in bed too much. Your daughter sounds like a good little helper.

Diana, the steroids are good for headaches and inflammation. I love my steroids when I get them. I spend my awake moments reading, writing and playing candy crush. And scrabble.

Hugs,

Brenda

diana50 · July 2015

Shout out to my Lxempra peeps.

Still enjoying steriod. Hosed off patio and got stuff done. The spinal tap headache and neck ache still bothersome but steriod helped. The " nasties" start tomorrow and Friday. Hopefully get on other side weekend. Chemo was Monday.

Kelly. Been thinking about you. You are getting close to end of WBR. Hope side effects are not too hard. Warrior. I just know the rads are going to take out the cAncer. Please hang in. Your family is either there or on the way. Give them work to do and snuggle with your daughter and husband.

Brenda. I checked your profile. Teacher eh? I was a teacher/coach for 15 years before I returned to school to become LMFT. ( child therapist ). now retired. 👍 hope you are feeling good and no complications. When is next infusion ? Enjoy the feel good.

I fly out to Iowa August 6-9. Next chemo for me August 10.

Will be recovering from Monday's chemo the next few days. Both of you 👊👊 pow that nasty cAncer. ️Hugs.

Catesmom · July 2015

Hi gals, I'm not doing very well currently. I'm in the hospital with pneumonia and upper chest cellulitis. Hurts like hell! Slowly though it is better than last night. So so tired, sleepy. My arms are swollen too. I saw an infectious diseases doc today so hopefully these meds work quickly., he seemed very competent.:). I'll take all the prayers and good thought please!!! Kelly

Catesmom · July 2015

Oh, and I still didn't get to finish the WBR. I'm 7/10 completed. Totally different problem this time though. The WBR has been easy!!!! Kelly

diana50 · July 2015

kelly

I am so sorry you are in the hospital but sounds like a good place to be do you can get medicine and heal up. That sounds like it came out of nowhere. Our immune systems suck.

Well I am sure they have you on IV fluids and meds. Hopefully you will feel better. Rest. Rest. Big prayers to lift you up.

️Hugs

Diana.

Anonymous · July 2015

On September 11, 2013 my attending physician at the hospital slumped down the chair next to my bed, started weeping and said,
"I wanted it to be a pulmonary embolism!" I had to laugh in spite of the dire circumstances. A pulmonary embolism is curable and something "normal" people get.

So Kelly, I know you feel crappy but I also feel that you now have something that "normal" people have. It is curable and hopefully it won't complicate what you already have. Who knows it may even rev up those lazy cancer fighting cells you have always had!

Diane, enjoy the steroids while you can and hope your down days are not too bad!!!

I was feeling really well when I got injected with procrit because my rbc was not high enough. Muscle pains. Thanks, procrit.

Hugs,

Brenda

GemStateGirl · July 2015

Hi everyone,

My current chemo (Halaven) has stopped working and my doctor is recommending I switch to Ixempra. I remember reading scuttler's struggles with Ixempra a couple of years ago and swore I would never do Ixempra but then I found out she's been NED for 3 years. I also started following this thread. While it doesn't sound like Ixempra has been a picnic for any of you it does sound like it's doable.

My oncologist is on vacation until August 4th but I'm going in to to see her NP tomorrow to discuss whether it's worth doing another round of Halaven. I'm wondering whether any of you had to have a "washout" period before you started Ixempra where you didn't do any chemo for a couple of weeks? If so, how long was that washout period?

I'm trying to keep the time until I start Ixempra to a minimum since my cancer seems to run amok when I'm not on an effective chemo.

Thanks for your help!

Pat

scuttlers · July 2015

Pat,

I am a gem state girl also. And yes, the Ixempra was worth it. Yesterday I put up 6 batches of pickles. And played with my chickens. And went out to dinner with DH. All would not have been possible without those horrid months of getting through the Ixempra treatments. Hugs.

diana50 · July 2015

Pat

I was on weekly taxol for 30 doses when it stopped working in May. I did have a bit of chemo break inbetween finishing taxol and starting Lxempra mostly b/c I wanted to travel to nephs graduation in minneapolis.

I have a good feeling abou this chemo. Already I look better and body is working. Kidneys and liver function in normal range. I had #4 last week and am now in recovery until August 10.

My experience

1. The hardest days are day 4-5 for me. Counting 1 day of chemo

2. Constipation from precocktail. Prune juice works and I supplement with Slow Mag. My magnesium level drops. And sometimes potasdium banana. My onc gives IV mag and potasdium when my body needs it. I track all my blood work

3. Protocol is neulasta shot day 2. Plus steroids day 1 and my onc gives me another steriod day 2.

4. There is body pain; from chemo and neulasta shot.

5. This chemo gives me nsysea but only for 2 days. I haven't used Meds but only pepto Bismo. Coke One and ginger helps.

It really does take 10 days to heal after infusion but then you have 2 weeks of not too bad. I plan to visit family again four days before chemo #5. My best time is right before the next chemo

Weekly taxol left me really struggling and bad neutopathy. While in lxempra neuropathy not as bad.

I really like the 1@3 weeks. Seems like a vacation. This is powerful chemo. I think on my next scan I will get good news. (Praying) I will have a scan after 6/7 chemo so I have a few left before then.

My red cells hover around 10.5-11.5. But I also walk 30-45 minutes a day to keep some level of fitness. I have lost weight 8 pounds but I am. eating healthier.

Scuttlers had a great response. 👍. I pray we all do.

My break was 4 weeks and then I was back at it

That's all I got. My onc does blood work every week and support IV fluids , magnesium and potasdium if need it.

Best

Diana

Anonymous · July 2015

Pat, I had a 4 week "break" and during the last week my cancer pain was so consistent I could not wait to get back on something!

My pain is not completely gone, but nowadays I can go 3 days without pain pills,

Scuttlers, we all want to be like you!

Kelly, how are you? Are you still in the hospital?

Diana, let's keep kicking this cancer's butt!

Hugs,

Brenda

Anonymous · July 2015

2 days after second infusion, I feel very, very uncomfortable and yucky. Yuck.

diana50 · July 2015

Brenda

All you can do is drink fluids and go to bed. I know. This is a rough chemo. Hopefully in a few days you will feel better. Hang in.

Diana

Catesmom · July 2015

Hi everyone. Sorry I haven't checked in earlier. I have bad pneumonia as I Had mentioned before. They have my left sided aspira drain to suction now so it is a chest tube now. They are giving me TPA through the drain trying to break up the pockets of junk in my lungs. I'll probably br on that for another few days. The drain is infected and will have to be changed at some point. It won't heal until the infected drain is out. Antibiotics are my friend.:). I feel okay, just very tired. A lot of my family is visiting and my DH is keeping them entertained. I love them all so much and it is great to see them. Chemo and WBR are waiting for now. I haven't given up yet, but when that time comes I will deal with it.

I hope all of you are hanging in there. It's not easy sometimes. Or all the time.....thinking of you and wishing you all the best. XXXKell

diana50 · July 2015

hi kelly

Gee hope they can get that infection gone.

So glad you get to see your family. Just has to be wonderful. Good husband entertaining them.

Rest and get over the peunomia and know prayers are coming in. Thanks for checking in. ️Hugs

Diana

GemStateGirl · July 2015

I just wanted to check in quickly and thank you for your responses. Like Brenda mentioned, I can't wait to start this new chemo since I feel worse when I'm not getting any. I'm very tired and often feel weak, but, luckily, in a controllable amount of pain. What's controlling my pain (morphine) is also making me more sleepy so I can't wait to get back to actively treating the cancer. I'm sorry that I'm too tired to say any more at the moment. Just wanted to let you know how helpful you've been.

Pat

diana50 · July 2015

Pat

Just hang in. The Lxempra will work. It's a good chemo. But remember you will feel icky for a couple of days. But by day 10 start to recover.

Best wishes.

Anonymous · July 2015

Thanks, Diana! Can't wait for day 10.

Kelly, sorry about the pneumonia, but glad that your visitors are making you feel good and that your husband is up to entertaining them!

Pat, do you have a choice of pain meds? Maybe there's something that will keep you up while relieving you of pain? Hydrocodone does not make me that sleepy. The 10 mg. one is what I take.

Anonymous · July 2015

Thank God for ginger candies!!!

diana50 · July 2015

Brenda

Yes I found some great ginger candy on Amazon. For chemo nausea and other stuff that causes nsusea.

Also peppermint essential oil works. I just take whiffs (no too close to bottle) and that works for nausea

When I am bad. I just keep reminding myself "I will feel better".

Hang in

Ixempra!

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