MRI on Monday

[PJBinMI]

My first MRI taught me that I am not claustrophobic, LOL, but the noise really made me crazy! I think this will be the first MRI since I started Xeloda earlier this year. Cancer had stopped being E + and became triple negative, not good news at all. So, hopefully this will let me and my treatment team know if the Xeloda is working. Results are usually on my patient portal later in the day.

My hands get so red, skin on fingers cracks, hands always feel like they are covered in hand cream. Coordination and sensation aren't good. I did see a hand surgeon and he diagnosed carpel tunnel and operated on my right wrist. Hard to tell if there is any improvement but I think my hand is a little stronger and my handwriting is better.

Then I saw a foot surgeon at the same practice. He recommended leather brace and Rx shoe for right side but the place he sent me to thought I needed those on the left, too, which is actually the side that gives me the most trouble. So that was added and the shoes are to be shipped to the shoe place Monday. I can hardly wait! Hoping I can quit using my walker when I leave the house, graduate to a cane and then maybe get rid of that!

I've been having good days and bad days. Bad days aren't dreadful, but my balance is off, I have a hard time being constructive (mostly meaning not sorting thru stuff to get rid of) My short term and long term memory are problems (neurologist said those are normal foro my age-77). Troublesome on bad days. Sigh.

But today is a good day! yesterday I boxed up shoes to take to Goodwill. Today I hope to box up some clothes. I lost alot of weight after having an intestinal blockage with surgery for that a year ago, went down 3-4 sizes. I'd like to lose about twenty more pounds but am not worrying about that! I bought alot of pink stuff this year, to wearing this month during BC Awareness Month. I also got some pink gel to put in my hair. I used that yesterday and my dear husband didn't even notice! Thankfully, my sense of humor is intact!

I hope everyone here has a good weekend! Peace and big hugs to all...................

[bubblystream]

Bless you! You are going thru a lot! Had to smile your husband didn’t notice your pink hair😂. You have been alive with metastatic breast cancer so many years! I am sorry it turned to triple neg. 😕

But seems you are pressing on!

[PJBinMI in reply to bubblystream]

Thank you! I'm glad you got a smile!

[Nocillo]

That MRI noise does make one crazy! It took 3 days to get it out of my head. Hope your new shoes work!

[PJBinMI in reply to Nocillo]

Thank you! I do think they have gotten less noisy since the first one I had, but stilling way too loud, that's for sure!

[Ntash01]

I’ve had around 11 MRIs since my journey began and the only thing that gets me through 1 hour in that noisy claustrophobic contraption that’s aiding to save my life is music. Have a go next time hope it helps! I had an MRI on Friday, first since being on new treatment - I’m hoping for stable but praying for shrinkage, and doubling my prayers for no new activity!

Humor is a great tool for sure….wishing you all good things and I’m so sorry it’s changed to triple negative😔Love reading your posts btw!

N

[Hopeful4Cure in reply to Ntash01]

Hello Ntash, Has the cold capping worked? How have you tolerated thus far the treatment? I too hope that your mri shows that it is working. Had you in the past have pet scans or always mri's. Hope all is well.

[Ntash01 in reply to Hopeful4Cure]

Hey Hope

Good to hear from you

I have always had MRIs my onc had originally told me if I can tolerate it, that’s what we’ll go with. I’m not great at knowing which is best - but my limited knowledge believes each scan can be compared to the one before and I’m in the MRI machine for a full hour each time. So it’s thorough.

Treatment so far has been ok, tingling toes have started but funnily I don’t feel it when I’m actually walking. Biggest problem is I keep getting colds, my immune is low so I do need to sort that. I’ve discovered Beroca- it’s amazing at giving me energy. Cold cap is working, my hair has thinned but only I notice. My biggest issue with my hair is my roots, I’m so sorry it sounds so vain - I’m using L’Oréal spray to cover because white roots give impression I’m bald. I’m still working- so looking like ‘me’ is important. I’ve been researching and I’m so tempted to do a semi dye on my roots but I’m sure I’ll regret it!

How are you? You ok?

[Hopeful4Cure in reply to Ntash01]

I hear you loud and clear. Glad to hear so far all is well, as good as we can expect. Have they checked your tumor markers yet? Do you feel better, like less pain? I too still work and I'll have to use my wig from 2016. Had pet this am, because last week the meds for the pet did not arrive. Go figure. However, they also included my legs this time. Problably lit up and they thought it would be a good idea. Just hanging in there have to go back tomorrow to go over scan, if it has been done. Hope you continue to do well. I wish I could find the cold capping here too, but if there is cancer lesions on the skull or brain, the meds won't work. That is what I was told.

[Hopeful4Cure]

We understand and I too really need to go through old clothes and shoes. I hope that xeloda works for you. It did not for me and I am er/pt+ her2low. It is interesting that that drug can be used for triple neg too. I was under the impression that there are certain drugs for certain types of dx's. Sending positive energy and hoping that your blood work shows it is working.

[Figletf]

Yes,The MRI is terribly loud.Such a weird experience for sure.Hopefully it will prove helpful and a positive way to proceed for you.

I too am nearly 77 and suffered with hand and foot issues while on Xeloda.I also have neuropathy from my first Taxol infusions.Now I am currently on Enhertu infusions which makes me shaky and nauseous.I just keep praying that this drug can finally eliminate the cancer cells and let me have some life again🙄

Prayers that your situation improves and your struggles are lessened❤️

[PJBinMI in reply to Figletf]

Thank you! One of the few benefits of being "older' is our cancer cells do tend to not be very aggressive. Your not got me thinking...I think I will pretend the MRI machine is a rocket ship on its way to Mars, lol, (Side effects can sure be awful!)

[Figletf in reply to PJBinMI]

Funny but I did that very thing at my first MRI experience years ago.I imagined I was on some new Disney ride😁

[cpidacks]

The MRI can be noisy. The technicians put ear plugs in my ears and I have ear phones on to listen to the breathing instructions . This seems to help the noise. Doesn't seem to be as loud as it could be. I also wear a mask over my eyes even though I am not claustrophobic. I would ask the technicians for ear plus or bring your own. They may help with the noise. Good luck to all of us in our journey.

[PJBinMI in reply to cpidacks]

Thanks! I do bring ear plugs, and get cotton and tape fro the tech.

[NPmary]

PJB, sense of humor is definitely required. I know, I don't post alot (maybe I will soon) but I really appreciate when you and others do. I am glad you are doing all you can for your quality of life. When I have MRIs I finally learned not to have any piped in music, I meditate and pray my way thru the noise and do ok. ❤️🌺❤️

[PJBinMI in reply to NPmary]

Humor and meditation help me, too. Much better than when I was first diagnosed.

[NPmary in reply to PJBinMI]

YES!

[13plus]

Had to laugh at your hubby not noticing your pink hair. What is about so many men not noticing things?! lol, I'm glad you could humour yourself about it. I get thru the MRI with ear plugs and by "getting into the beat", well the first part is trying but once it gets going I let the rhythm go through me like a meditation. The only issue with that is that it eventually lulls me into a deep relaxation and I have to be very careful to not fall asleep and then "jump" as I doze off 😂

They act like I'm crazy for not accepting the music offer but I don't have great hearing and I hate being only able to hear the 'noise' of the music, without being able to make out the tune well enough over the machine to appreciate it!

Are there any meds specifically for triple neg now? I thought there was, but perhaps I'm wrong. Either way, I really hope the xeloda is working for you, and good luck getting your new shoes Monday!