26 replies to this topic

[Pin]

Lucky, I'm so sorry you are going through this. It is so hard sometimes having this disease, it feels like everything is always resting on a knife edge and if we do anything wrong or different or make a decision to try and improve our quality of life, it feels like we get punished for it. Just for trying to feel ok in our every day life. That's how I felt when I took those herbal medications to try to improve how terrible I was feeling. I had increases just like you, I was so scared, and the worst part was that I felt that it was my fault so I blamed myself. The reality is that it may have been the herbs, or it may have just been the plateau that a lot of us seem to get. Maybe this is your sprycel plateau, I hope you get some good results with this test. Waiting for results can be torturous.

I feel like I made a bad decision. I've just come back from a trip to Spain to present at a conference. It was a great trip, but I was very nervous about the travel on the plane, the flights took 32 hours to get there. Now I have returned with horrible spinal problems from the travel. I have swelling in my spine that is causing numbness and tingling down my arms, as well as severe nerve pain in my neck and shoulders, and from this injury I now have something called thoracic outlet syndrome. The doctor says it is going to last another 3 months unless I have a steroid shot into my neck. That is scary. Even then, he said it would just speed up the process by half. So I am facing half a year worth of pain (I hope it is not longer than that, or permanent!). I can't help but feel that I shouldn't have taken the chance. The pain is making me feel very sad I hope you get your results soon and that you get some relief from the worry.

[gerry]

Pin,

I'm sorry to hear you're going through this. Are you allowed to have physical therapy to help with the thoriacic outlet syndrome?

[jjg]

Hi Pin,

Real bugger about the spinal pain. Are worried about the steroid injection because of TKI interaction - I've been given the ok for steroid injections (including one into the neck, CT guided and am supposed to have one into L5 soon) as the interactions are for much higher steroid doses. If you are worried about the disturbing idea of getting a needle stuck into your neck some places do it under light sedation. Steroids are not a magic cure but they do give the healing process a head start and can often give you the ability to start or do more physio/strengthening work. One of the really frustrating things about the TKIs is that we seem to be more subject to injury and slower to heal. 

[CallMeLucky]

Well my doctor just called me at 8pm to tell me I'm pcru. He said he didn't want me to wait any longer than necessary. I am completely baffled by this. I don't get how you go from PCRU, which is lower than 0.00325 (limit of detection) to 0.0457 and then back to PCRU 4 weeks later. The only logical answer is the lab result was off. I'm a mess from this damn up and down. I feel like a fool for the anxiety I have but I know that's just the way my brain works and something I will have to continue to work on. I know the next time it blips I will probably freak out again, I will need to really work on this.

Pin
I'm sorry you are having pain and I hope you can find something that works. I am now taking diclofenac for pain and it helps a lot. Traveling on Sprycel seems to be tricky. Soon after I started I flew and I felt like my chest was going to explode. Dr said it wasn't the flight but next time I flew same thing. I now have a routine where I take gas x before I fly and it seems to help. I know not related to your issue. Sitting for long time can be tough on body. For what it's worth I don't think you harmed anything with the herbal stuff. I don't think we can impact as much as we think. But I know regret and I understand why you feel that way. I constantly question everything I do lately with my health. I hope you are feeling better soon.

[pammartin]

Never feel like a fool or dismiss your feelings Lucky, they are yours and they are important.

Congrats on your results!!!!! Great news right before Christmas (or any day).

[chrissy778]

Merry Christmas.  That is Awesome, words can not express how excited and happy I am for you.......  I know what a relief this must be, I suffer extreme anxiety every day.

[Pin]

Lucky! Yay!! That's great news, I am so glad to hear this for you! I have been taking diclofenac for a month already, I think it is helping but not sure- I hope it doesn't cause any stomach issues for me :-/ I think you are right about us having less influence...except for the taking our meds daily part.

Thanks Gerry and Jjg - I have been doing physio for 8 weeks, it helps a tiny bit. I had 3 sessions of acupuncture last week, which flared up the muscles like crazy but then 3 days after each session it felt a bit better. I am mostly just scared if something goes wrong, I've had a lumber one before which was ok. I can't believe you are having one in your neck too - mine is c8, apparently a rare nerve to injure. I also have swelling at T1, which is thoracic. It's feeling a bit better the last few says, long way to go yet though.

Hope everyone has a good holiday xx