44 replies to this topic

[jjg]

It's hard waiting to get started but rest assured that in chronic phase CML is a pretty slow moving thing so the biggest problem is that these guys are messing with you. I did two IVF cycles before starting (to store younger embryos) so I had my first tablets sitting on the bench staring me out for over a month. They drove me mad but in the end the first pill was just a swallow...even after that it took 1-2 weeks for the side effects to really get started.

I was only a little bit fatigued at dx so the fatigue that came with gleevec was something else. Certainly a lot of people talk about fatigue with tasigna but it might not be worse than what you have now. Certainly I have had to accept that there will be days or more generally blocks of time in days when I can't function. Generally it is worst in the first 6 months. For me it was the kind of fatigue I couldn't fight, and believe me as a middle distance runner I fight fatigue better than most. Sometimes I just had to rest.

If you are exhausted now, rest, sleep. CML is not the common cold...it's ok to be tired.

Having said all that we've been renovating ever since dx...a completely crazy idea. We are doing up our small flat with large garden so that we can sell it and move into the inner city. We did hope to have it on the market about 6 months ago but things have gone slower than expected...some of that is me only being able to work about half as much as before but the bigger problem is that I'm married to a perfectionist. I was only this morning looking at the bathroom window frames which I stripped, filled and undercoated (yes yet to be finished) right at the peak of my fatigue, not a hard job but I sure remember having to lie down a few times. Don't forget to take before and after photos.

[luvmybees24]

Mine has to be ordered to the pharmacy a week before..but now I get it free from Novartis because of my financial situation. What are your WBCs? Tasigna has not made me tired at all, in fact it may make you feel better. I was dx with WBC of 31 so it wasn't that bad to begin with. I was nervous and had my mom stay with me the first 2 days of the pill in case I had bad side effects..but 2 months later i just have longer menstrual cycles and dry skin. The dry skin may be from it being winter. I also bloat a little in my ankles. I am 34 so not sure if that matters in regards to my energy but I feel fine.

[KerriD]

Did you try Walgreens?  I was diagnosed started Tasigna in Aug 2011 and I was told I would have to order it through a specialty pharm but I thought I would just check at Walgreens..sure enough they get it for me....just takes a few days.  I usually order my refill on the start of my 3rd week of pills....

Also...I had fatigue, itchy skin and some gastro issues the first few months but now feel better than I have in years.  My last 2 PCR test showed BCR-ABL was undetectable in my blood.   It is an amazing drug.

Good luck and keep us posted,

Kerri

[lrock]

I did try Walgreens, CVS, Rite Aid, mom and pop.  I really tried to cover all the basis, but no one could help.  I guess it's b/c I live in the backwards state of SC.  (No accent though lol)

I called the pharmacy again today, they still don't have me in their system, will try again tomorrow.  she said it usually takes a full 24 hours to get in their system.  I decided I'm just not going to worry about it - it will get here when it gets here.

At last test (1/20/12) my WBC was 37.1.  He said that was worse than the week before.  Slept pretty well last night, still pretty tired today. 

[minniehill]

Have been unable to "start " a discussion but need to start somewhere!

I was diagnosed in September 2011 BMB; started Tasigna  in October150mg x 2. Had a year of feeling terrible before diagnosed, had no health insurance, lost my job in 2009 & really struggled with my buiness due to the unknown CML.

some tricky side effects initially, thought I was out of the woods when lo & behold started to experience a scalp on fire, hair thinning/loss, face red, rash on arms.

So tired of feeling I should be grateful when I the hair/skin thing has made me so miserable, I feel like I have no right to complain but I actually feel really hopeless today. I'm widowed & somewhow these side effects really make me feel like I 'm destined to be alone.

My oncologist & her nurse @ Memorial Sloan Kettering are wonderful but today I feel so miserable & guily for being miserable1

The Tasigna is effective in terms of results but these new side effects are so horrid. Dermtologist gave me hydracortisone for face AHHHHH!

Worsd of wisdom please, thank you

[Lizzybee]

Minniehill,

I'm sorry you're having such a rough time. I know how you feel about complaining. CML has come a long way and we have so much to be thankful for, but still, the side effects are no fun. You can come here and gripe all you want to!

I use tea tree oil conditioner to help with my itchy scalp, and it really does help.  I use Trader Joe's which is only $3.99 for a bottle that is about 16 oz.  Paul Mitchell has tea tree conditioner also, but it's more expensive.  Find a very gentle shampoo that won't dry your hair and scalp.  I use Biolage Color Care shampoo about once a week. Most days, I just wash my hair with conditioner because my hair and scalp re so dry from Tasigna.  Eucerin is good for dry skin.  For my face, I'm careful to use only very gentle products.  On www.beautypedia.com, there is a list of the best products for sensitive skin.  It's a good place to start finding some products to try.  Most places such as CVS and Target will refund your money if you're not happy with cosmetic and skin care products, so until you find what works for you, be sure to only buy from places that will give refunds for opened products.

[minniehill]

Thank you so much; have the side effects diminished at all?  Having a challenging day, been using cetaphil cleaner / moisturise. skin tiny bit better, not scalp.

[Lizzybee]

LRock, Any meds yet?  Try not to worry too much about your wbc count.  Mine was 317k at diagnosis, and I was still in chronic phase.  Not that I advocate letting it get that high!!!  But as someone else said, CML is a slow growing cancer, so try not to stress out while waiting for your meds.

I don't know your insurance company limitations, but I'm in NC and I use Biologics to get my Tasigna.  They always call me a week before it runs out to set up the shipment.  It comes via Fed Ex and if no-one's home, they leave it on the porch.  It's kind of unsettling at first to see that box labeled medical necessity sitting on my porch!  But Biologics is great to work with!

Elizabeth

[Lizzybee]

Minniehill,

Yes, my scalp doesn't itch anything like it used to.  My skin rash comes and fades, but never quite goes away completely.  The current most annoying side effect is that my eyes feel swollen and itchy when I wake up in the mornings, and my vision is blurry much of the time.  I really should go visit my eye doctor just to make sure everything's okay - just haven't had the gumption to pick up the phone and make an appt yet.

Elizabeth

[minniehill]

I'm delighted to see I'm not the only procastinator out there, sorry to here re your eyes, how bad will it have to get is the question I ask myself.   Feel likeif it's not one thing...............

did your hair recover?  scared to use too much conditioner.

I have found myself very busy doing the "stiff upper lip" reluctant to share how unhappy & depressed I am on quite a few days.

Somehow the hair/skin thing really jolted me, too clear a manifestation I guess.

[Judy2]

Hi Minnie,

I also have had terrible rashes and dry skin problems from the meds. When I was on Gleevec I developed rashes and seborrhea, on Tasigna my rash was so bad that my chin and the area between my eyebrows were swollen and with Sprycel I had a rash and welts on my face, also my eyes were somewhat swollen.  I, too,had hair loss but for other reasons. I am now on Pednisone 5mg a day and the rash has gone and my hair has stopped falling out. I use Basis soap for sensitive skin on my face and for a moisturizer on my face I use Cera Ve with the blue and white label . For areas on my face that are not as dry I use Moisturel. I also am using Tresemme conditioner in my hair. Minnie, I know just how you feel. Not only is the rash a reminder of how harsh the meds are that we are putting into our bodies but a rash on our face is there for everyone to see, it is the picture we present to the outside world. The Prednisone has been a tremendous help to me, although I will say my face is puffing out from it. Unfortunately, we need to take these meds so hopefully the side effects will lessen over time, many people say this happens. Also, a new drug is set to be approved this year, Bosutinib, that supposedly does not affect the hair and skin as much as it does not inhibit C-Kit. Hope I was able to be helpful.

Judy

[pamsouth]

Judy2 I have only been on G.  I didn't have the rash with Gleevec but I had other side effects.  The side effects are tolerable most days, but if I get sick or schedule to much on my plate it takes me much longer to get back on my feet and I will sleep to much.  So I have to be careful to take care of myself and I try not to go out to much in the winter during flu season.  I do have horrible chronic bone pain.  However I think it started with the CML as I had it before Gleevec, however since my CBC and labs are good I would have thought the bone pain would have went away, It is mostly in my neck, shoulder, and all over my back?  Plus when my hands are chilled my fingers turn white and I have to put them in warm water for about 15 to 20 minutes or I use hot wax on them if they get really bad.

Tasigna is suppose to be a cousin of Gleevec.  Sprycel I believe is suppose to be totally different chemicals. Regarding the Bosutinib, in my opinion anytime you put foreign drugs or chemical in the body, well I think they all have their own demons.  I know we speak of them as a targeted drug.  When my first onc said are you lucky you are on a target drug, I kept thinking to myself, look at this long list of side effects, these are strong, chemical I am putting in my body, but what is the alternative? 

How long have you been on the sprycel?  I think you said 50 mg, which would be a low dose?

PamSouth

[SharaT]

I was also dx on thurs! My doc was a bit strange! Told me I was to young for CML but Inhad it and gave me a pill. Needless to say Im going to md anderson next weekfor a second opinion! I havent had a bmb either! Can they dx you with out one? Doesnt seem right!

My CBC 6 months ago was normal but 2 weeks ago was 36,000 then a week later was 23,000.  My rdw was a bit high and my neutrophils and monocrytes were a lil high as well. Those of u who dont know I was diagnosed with CML last week which is chronic lukemia. I go to md anderson nxt week for a 2nd opinion. I want everyone to pray that when they redo my test I WILL be cancer FREE! If we all come together i believe this can happen!BUT everythig else was normal!! ?!?!?

[SharaT]

Sorry that no sense lol! Dang iphone wigged out on me! Sorry gals

[Judy2]

Hi Pam S.,

I have only been on 50mg Sprycel for 2½ weeks but I think this med is going to do the trick. After just one week on it my neuts and lymphs were in the normal range, this never happened to me on Gleevec, even when my WBC was  normal. I agree with you when you talk about these meds as being targeted drugs. I have had so many side effects on them that I feel like a walking dart board!!! As for your bone pain, do you know what your ALK P'TASE level is? When your ALK P'TASE is high but your other liver function tests are normal I believe this is a sign of a bone problem as ALK P'TASE can come from the bones as well as the liver. I mention this because mine is high.

How far are you from where the Super Bowl is being played? It is very cool to be in Indiana right now.

Judy

[lrock]

Hi Lizzybee!

I did get the meds worked out finally, this past friday.  should have my first delivery on tuesday.  I'm having them shipped through CVS Caremark (their mail order part) and we'll see if that goes off smoothly.  Having them sent to work, I'm afraid if they came to the house they wouldn't be here when I got home.  I actually started the Tasigna last friday 1.27.12 with some doctor's samples.  went back this past friday for first weekly blood draw and EKG.  should have results on Monday.   I don't feel like I'm having any major side effects, other than I'm dry like the Saraha desert and I noticed my blood sugar was elevated a little.  but as far as rash or gastro stuff, no issues thus far. 

This is kinda off topic, but has anyone gotten a tattoo since their Dx?  

[lrock]

No prob Shara.  I had no issues but fatigue but my WBC was off the charts - that's what started it for me.  Just found during an endocronolgist appt routine stuff.  but, you never know, so get that 2nd opinion.  We'll be here awaiting the answer!  you said your doctor says you are young - how old are you?  I'll be 40 in a few months.  I'm the youngest person with CML of my oncologist's and also the only pt he has on Tasigna. 

[lrock]

Minnie, complain away chick!  that's what we're here for - we understand better than anyone else can.   I haven't experinced many side effects with the tasigna, but I was terrified to start taking it.  Of course, that could change, we'll see.  I hope things get better for you and these girls give great advice.  Drop in to see me again!

Leigh

[SharaT]

I just turned 30! I'm really young and was told was impossible to have at my age! :( yea I'm getting a second opinion for sure! I feel fine but some night sweats here and there . I just thought I was hot!

[luvmybees24]

I was dx at 34. I'll be 35 in three days. I know we have younger people on this board too with it.

Laura.