Jump to content

Could really use some prayers and good thoughts


Recommended Posts

Hello Lungevity Family,

After 3 very positive scans (the last being only weeks ago), Mom has been having some discomfort and issues the past few weeks ... actually she alerted me the day we saw the oncologist last (3/30) but said it wasn't bad enough to say anything to him (that's my Mom!). She feels as though she has sunburn pain across her abdomen and clothing brushing against the area causes pain. She also feels a tinge or jolt of sensation now and then - with increasing frequency. Her GP (who I am firing) mis-diagnosed her with ringworm on the 9th and last week we had a follow up visit, went for a consult with a neurologist and had an abdomen and spine MRI. The neurologist reports 2 areas of "concern" on her spine and was to compare this scan with the one she had done in June of last year to see what has changed.

Needless to say I am worried and it hurts me that she is in pain and was mis-diagnosed. She has been prescribed neurointin (sp) but that hasn't made any difference in the past 5 days. :(

We go to follow up with the neurologist tomorrow morning. I could use all the positive thoughts anyone can send and any words of advice.

Thank you and blessings to you all,

Kimberly

Link to comment
Share on other sites

Kim lots of positive prayers and thoughts for good things to happen! I am so sorry to hear about that misdiagnosis. Keep us posted on things and Thinking bout you and the family!

Link to comment
Share on other sites

Kim, no advice but I'll be sending a ton of positive healing thoughts your Mom's way. So sorry to hear she's in pain and hope they get that taken care of real quick. Please take care of yourself too and keep us posted.

Judy in KW

Link to comment
Share on other sites

Kimberly,

Sorry your mother is having a tough time right now. It does sound like nerve pain, and if it is, the Neurontin should help, but sometimes it takes a while. Best wishes for her; I hope she gets better!

Link to comment
Share on other sites

Thanks for the support and kind words everyone. I have this crazy mindset that I am at more of a loss and am more caught "off guard" then when she was first diagnosed ... geez was that only 10 months ago?!?! I recall the last series of tests and procedures done swiftly and felt like we progressed from the unknown to treatment plan fairly quickly. Well, and the increasing discomfort this time, I feel begs a greater sense of urgency which seems to be lacking.

The nerve induction today did show that she has neuopathy in legs - but neuro said that wouldn't explain abdoment sensation/pain. Still very inconclusive – could be a few different things. A nuclear bone test needs to be done (and is being scheduled). Why wouldn't they do a PET? Her oncologist maintains that with no sign of any growth in the original spot, it’s unlikely that a new spot would have formed. Does that ring true or seem like BS to anyone? Anyone else experience this situation (or anything else) 8 months after treatment?

It’s very baffling and frustrating and I don't feel like we are any closer to an answer 11 days after her first GP appointment (which was basically useless anyway).

On a positive note, she’s been upgraded to Lyrica today so I hope that makes some difference for her discomfort.

Thanks for hanging with me!

Blessings to you all!

Link to comment
Share on other sites

I have this crazy mindset that I am at more of a loss and am more caught "off guard" then when she was first diagnosed ...

That's not a crazy mindset. It's hard to deal with anything that seems like another or expanded problem when you feel like the original is being dealt with. I totally get that. As far as the oncs comment, it does seem to follow a certain logic. And PETs are controversial. I know I get a greater number than some oncs would give. How long do you have to wait for the nuclear test?

Hang in there. Just like before, things will settle down as soon as someone gives you an answer and a plan--and they will. We have to trust that once they are watching us so closely.

Judy in KW

Link to comment
Share on other sites

Kimberly,

No advice here, but do want you to know that prayers are going your way.

Just you being there for your Mom and advocating for her will help her greatly. I know the frustration that comes with any misdiagnosis along the way. Importantly, your Mom has you there as a staunch ally, and a steadfast element in the journey to help keep on top of things.

Regarding Lyrica, it can take a while to set in for relief of discomfort. It has been known to work over time.

Good thoughts and prayers for you, Mom and family,

Barbara

Link to comment
Share on other sites

Kim,

I continue to keep your mom and you in my prayers.

I can say that I don't understand the mindset that because there isn't activity in the original area- that "it's unlikely a new spot has formed".

I'm not an oncologist but let me say that my dads original tumors (2 in left lung) disappeared after the 2nd round of chemo...and never came back...but he got mets in 3 other parts of his body. SO I don't understand that statement at all.

If anything sounds "off" to you, keep fighting for what you believe in.

Maybe write to Dr. West at GRACE and see if he understands why this dr. is recommending what he's recommending.

Hang in there. Lots of prayers of healing going out to your mom.

Hugs

K

Link to comment
Share on other sites

thanks ladies!

katie, i can truly appreciate what you are saying and that speaks volumes about the benefit of this wonderful place; that we can exchange personal experiences and results is more valuable that i can put into words. together we keep on learning, advocating and fighting the fight.

i will take your advice and reach out to dr. west. thank you.

thank you all for the support ... i am sending it back with mine to each of you!

blessings,

kimberly

Link to comment
Share on other sites

Kimberly,

I agree with katie. My mom's primary wasn't growing but the stuff was moving around her bones like nobody's business. Her onc said it was unusual but not unheard of. That was TWO YEARS AGO. More radiation and a quadramet treament seemed to get the issues in her bones under control. Knock on wood, so far so good. The most important thing is to find out what is going on.

Susan

Link to comment
Share on other sites

  • 4 weeks later...

Hello,

Here is our quick update. We visited the oncologist and neurologist and had good news (or not bad news, more accurately) on all fronts. The 'bone spots' are not definitive as cancer ... just too soon to know for sure and too small to get a sample to biopsy; so more waiting and next scans in August. But, more importantly, her burning, pain, etc. is yielding to the drug (Lyrica) she has been taking. So, giving thanks for that! Though, no one can seem to figure out the root cause.

This serves as a good reminder not to take any good day for granted!

Blessings to you all,

Kimberly

Link to comment
Share on other sites

Just wanted to let you know that I understand about your Mom not mentioning all the details - you said that's just your Mom. It's just my Dad, too. He won't let anyone go to appointments with him and insists that he doesn't need to write anything down. With the cancer in his brain now he often gets confused and it is just not a good idea for him to go on his own, but he doesn't see that. He also doesn't mention symptoms, because I think sometimes he isn't aware of them and sometimes because he doesn't think there's much can be done for him now anyway.

It is very frustrating!

Link to comment
Share on other sites

All I can say is I took notes, notes, notes and became a staunch advocate for my Mom. It was tough, but needed to be done. Her doctors didn't cherish seeing me standing outside her hospital door waiting for them with writing pad in hand. LOL! It helped give her quality of life. I'm glad I could do it.

Judy in MI

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.