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On the precipice once again

On the precipice once again

Posted by ccgirl on Jan 30, 2019 1:22 pm

Hi All,
I had a lovely CLEAR CT scan mid December.  Felt great and was able to go forward and plan a wonderful two months at our place in Florida culminating in a drive home via New Orleans where we would take in Mardi Gras.
Jan. 24 I noticed a small discolouration on my abdomen, felt a pea size lumpsad.  By the way, I am living with Merkel Cell Carcinoma - a wicked skin cancer.

I had already planned a little trip back home at the end of the month in order to do a specialized blood test to monitor my MCC as well as getting in a quick visit with grandkids and my Mom.  Now, I am heading home to an appointment with my oncologist (the only "positive" thing about this was I got an appointment right away) but I am very fearful that I'll be cancelling my return flight.  I am so VERY sad.   

My poor hubby is my rock but it is agony for me to see his sorrow.  It is exhausting keeping the status quo with adult kids and my Mom - I just don't bother telling them until I have my next plan of treatment.  It is my gift to them - nights where they can sleep rather than sharing my burden.  Soon enough they will know - I don't keep things from them long.

This roller coaster analogy is very appropriate - I feel like I am at the top of the track; about to plunge into the pit.  I hope the rise on the other side arrives quickly!

Re: On the precipice once again

Posted by mycrazyjourney on Jan 30, 2019 2:01 pm

  ccgirl, you sound like such a strong lady, I wish you all the best. I agree with not worrying family until you need to, gives us time to process and deal with changes. Sending you a hug... take care, Therese

Re: On the precipice once again

Posted by ACH2015 on Jan 30, 2019 2:55 pm

Hi ccgirl‍ 

Good to hear from you, but I wish the circumstances were different.

Like you, I found a lump that did turn out to be a cancer recurrence - only 6 months after radiation completed. Insert scream, fear and colorful language, hit space bar etc... here.

The good news is that you found it, acted quickly and are in the process of getting evaluated. The best case scenario is that its not cancer and you monitor and move forward. The next best case scenario is that you get treatment and its the least invasive type because you caught it early.

I remember being at the top of that roller coaster again myself. Its scary and frustrating and just wrong. But we have to deal with it and move forward.

If I may, I get it with waiting to know what you are dealing with before announcing anything to the family. But if anyone asks, I would be honest that you are having something investigated that you found on your abdomen. That just makes sense, but don't hold back your emotions to spare others. I keep my wife and family right on top of whats going on with me. I would rather know what is bothering my wife, family and good friends sooner than later.

Sharing here and with others in your life is important, and a way to empty your emotional bucket. It keeps us healthy, and free of as much stress as possible.

Keep well and in touch. Let us know what you discover. It's better to have company on that roller coaster during the ride.

ACH2015 - Andy.

Re: On the precipice once again

Posted by Lacey_adminCCS on Jan 30, 2019 3:54 pm

ccgirl

Please know I'm thinking of you as you wait to get some answers. You can always share with us here no burden. 

I'm so glad you were aware and found it quickly and will now see the Doc quick. 

Do keep us posted and let us accompany you on this ride. 

When is your appointment? 

Lacey
 

Re: On the precipice once again

Posted by ccgirl on Jan 30, 2019 4:16 pm

Would you believe that I was able to get an appointment for Friday afternoon (I fly back in the early hours of Friday).  That was a very positive part of this - no waiting for an opening.  I'll know something about the next steps by 2:00 Friday.
Thanks Lacey and Andy, I'll post again once I know what the plan is.
A little aside here.....if I get sent for a PET scan in Hamilton....would you believe that the waiting room there has magazines from 1996 in it!!  I kid you not, I killed myself laughing going through them.  If I go there again, I'm bringing some 2019 magswink

Re: On the precipice once again

Posted by Runner Girl on Jan 30, 2019 4:56 pm

ccgirl‍ ,

Wonderful that you were able to get in so soon.  Keeping my fingers crossed for you for the best possible outcome.

Re: On the precipice once again

Posted by Kims1961 on Jan 31, 2019 12:10 am

ccgirl‍  I loved rollercoasters..until now wink  I will be sending you positive energies on Friday.  Like the others have said - you have acted on it quickly, got an appt quickly and this is all very very positive.

I can so relate to the look of disappointment or sadness in our loved ones faces.  They say that close to 90% of communication is non-verbal so it's also hard for our loved ones to "mask" their feelings.  

Sounds like you are taking charge of the things we can control - so although on a rollercoaster - it's one with a steering wheel or brake.  Keep going - we are sitting beside you on it!

Kim

Re: On the precipice once again

Posted by Cynthia Mac on Jan 31, 2019 9:33 am

Hi, ccgirl‍ , your comment about the magazines made me laugh! I can visualize you standing in front of the news rack, going, “Let’s see, a Zoomer, a Women’s Health, a Canadian Geographic...”

Your posts show a great spirit, although I agree with Andy about being frank with your “peeps.” We’ve been having a discussion on another thread here on Cancer Connection about how frustrating it is for family members when their parents (in that case) “protect” them from the details of their situation.

I join with the others in being happy that you got an appointment so promptly. I hope all goes well for you.

Re: On the precipice once again

Posted by ccgirl on Jan 31, 2019 10:11 am

Thank you all for your encouraging words.  I will be sharing my latest concerns with all my family within hours of speaking with my team...I just didn't want to rob them of happiness and sleep before I needed to.  My hubby (Buddy) always is in the loop; I don't try to navigate this in a vacuum and feel so fortunate that I don't have to.
Yes, if a PET scan is ordered tomorrow I plan on getting a "publishers' clearing house" selection of magazineswink

Best to ALL of us!  Kim

Re: On the precipice once again

Posted by ccgirl on Feb 2, 2019 9:51 am

Friday update:  I met with my medical oncologist and she did a punch biopsy of the nodule that I found on my abdomen.  Another CT scan is being ordered I that should happen some time next week. I also see that the routine blood test I do for her prior to any appointment shows elevated Lactate Dehydrogenase which is an indication of tissue destruction (like liver, kidney, etc.) and can be caused by cancer.   We had an informative discussion about treatment options if this turns out to be systemic metastasis of my MCC (which is the 'typical' progression of MCC).  Surgery won't really be an option at this time.  Cutting out nodule/nodules results in, what I've heard described, as "whack-a-mole"; tumours will just continue to pop up in different locations..  She will explore clinical trials in the future but most have eligibility only after routine treatment protocols have failed and she very much believes that this is not the point for experimental treatment.  Chemotherapy will be initiated upon confirmation of MCC and identifying where it has spread to.
I felt encouraged by my discussion with her - she said that in the event the chemo stops being effective she will switch me to the immunotherapy drugs and that the chemo does not reduce the efficacy of the immunotherapy.  If, and or when, the immunotherapy stops working she will switch me back to chemo. She said that she has clients that she does this with-back and forth treatment until it is contraindicated.   In short, she VERY much has an attitude of TREATING my condition - this is an important attitude for me.  I will know by Feb. 15 (at the latest) the results of the biopsy and CT scan; I hope that I am in treatment by the end of the month.  Let's "Sock it to my MCC"angry
I've discussed this with hubby and my Mom and will be telling my adult daughter  later today, my adult son on Monday (he's off on a snowmobiling trip for the weekend) and emailing family on Monday so my wonderful network of loving family will be in the loop.  I have the issue of not knowing day to day if I can scoot back to Florida as planned yet... but this condition has taught me how to be VERY flexible!  
So, I am moderately anxious, aggressively looking forward to treatment, a little sad that my wonderful winter plans have been spoiled, grateful that I have some resources to indulge on spur of the moment travel ideas, and very thankful that I have such access to supportive ideas and loving care.  This truly is a roller coaster ride; but isn't life really like that for everyone?!

 

Re: On the precipice once again

Posted by ACH2015 on Feb 2, 2019 10:26 am

ccgirl‍ 

Kim,

Thank you for sharing with us here. It sounds like you have a wonderful oncologist (I have one myself) that you trust and communicates everything with you so well. They truly should be cloned!

The treatment regime certainly sounds very positive and continuous, The experience your oncologist has in treating others like yourself with MCC metastasis will serve you well Kim. I admire your desire to get all the facts from your medical team. You and I are very much alike in that. No sugar coating, just the facts. I truly believe it helps us to process everything, with no surprises.

"In short, she VERY much has an attitude of TREATING my condition - this is an important attitude for me." This statement says it all Kim. I am glad you have this doctor involved in your treatment because she is certainly in your corner.

I have to believe that knowing that there is already a plan in place gives you some relief in having to wait until Feb.15th for confirmation of both CT and biopsy. You have an excellent attitude about self awareness, diagnosis and the acceptance of  potential treatment. We are with you in Socking it to your MCC Kimangry.

You have a wonderful and supportive family to share with on this roller coaster ride - and us here as well.

Have you subscribed to publishers clearing house to help update the waiting room yet? Plan "B" bring a bag of previously enjoyed newer magazines from home.

Keep well and here's hoping you get another week or more back in Florida.

ACH2015 - Andy.

 

Re: On the precipice once again

Posted by ACH2015 on Feb 15, 2019 9:11 am

ccgirl‍ 

Good morning Kim,

All the best to you today with your consult and results of biopsy and CT scan.

Keep in touch and keep well.

ACH2015 - Andy.

Re: On the precipice once again

Posted by ccgirl on Feb 16, 2019 8:55 am

Thanks for the reach-out Andy, The scan was ghastly (I'm NOT surprised).  Dr was shocked at the difference from Dec to Feb!!  I shouldn't be but that is the horrible nature of my cancer.  It is actually why it responds so well to radiation, immunotherapy and chemotherapy.  The key is to get some sustained durable response.
So, I think this is good news....Dr. Lee reached out to Princess Margaret Hospital to take me on - she feels that I deserved to have some sort of immunotherapy as first line treatment.  She said they though they could get me into something.  As always, my ONLY issue now is the wait (wtf?- she said if they don't call within two weeks contact her asap) - I sure hope they call fast, I feel like crap and if I am going to be travelling then I have to get strong again -haven't eaten much in two weeks😟.  Buddy, my husband, is here with me, he is going to  help me do the work to get stronger again
Plan B will be a dose or two of chemo and then she'll get me on immunotherapy.
I've got my work cut out for me now......

Re: On the precipice once again

Posted by WesT on Feb 16, 2019 12:46 pm

ccgirl‍ Sorry you are having to go through all of this. 

It is good to hear that things are getting fast tracked.  It is hardest in those down times waiting for the next appointment.

It sounds like your husband is a great support for you in these trying times. Good luck to you both!

Wes

Re: On the precipice once again

Posted by ACH2015 on Feb 16, 2019 4:30 pm

Hi ccgirl‍ 

Kim,

I'm sorry to hear the scan turned out the way it did. I looked up one of your previous posts (below) and wanted to ask you about the immunotherapy AVELUMAB you mentioned in the older post. I also looked it up AVELUMAB ARTICLE and linked it here. You probably already have it, but I thought it worth adding. I noted the approval was from February 2018 - so another year has passed, and perhaps so have the parameters for use. You also stated the immunotherapy's response is significantly reduced after multiple chemo rounds. That information may have been updated as well, and the good news is that there is another year's worth of data available to both you and your oncologist.

I am glad to hear you are being referred to PMH - I am sending you all my positive thoughts on this Kim - PMH is one if the Top 5 Cancer hospitals in Canada.
I know first hand how hard recurrence is on your mind and body Kim. The important thing like you said is to get yourself strong in both mind and body. The treatment plan is in the works. Yes its a wait, but it has started. You need to relieve that stress, get yourself eating again, and you said it before, your oncologists has the attitude of strongly treating your condition,  it's very important to you and it is moving forward.

The other good news is that you've already got a Plan "B" in your pocket with chemo.  My fingers and toes are crossed for you to get to PMH asap Kim. 

Re: Magazines at PMH - Most of the waiting areas have TV's tuned to CP24 and free WIFI all over. There isn't much in the way of magazines, but lots of reference material all over the place.
😉

Keep well, get strong, and lean on us as required for support and sharing.

ACH2015 - Andy.


Posted by ccgirl on Aug 19, 2018 11:45 am

Has anyone had experience with the Evidence Building Program within Cancer Care Ontario?  I have Merkel Cell Carcinoma that has been treated successfully (so far) with radiation.  I do believe that I will have to expand treatment options in the future as this aggressive cancer will likely metastasis further.  Immunotherapy is the protocol of choice as of last year in the USA.  Canada has approved  Avelumab this year but ONLY after chemo has failed.  As of now, first line chemo is contraindicated in MCC as results with immunotherapy are significantly decreased after multiple courses of chemo.
I will be seeing my medical oncologist on Monday (20th) and plan on discussing this with her.  I want to know how proactive I might need to be for future treatment protocols.  I have a 'Drug Access Facilitator' within my care group and I imagine I'll be having a lot of conversations with her.

Re: On the precipice once again

Posted by Kims1961 on Feb 16, 2019 11:50 pm

ccgirl‍ So good to hear from you and get the update.  Sounds like your doctor is doing an awesome job of looking at treatment options for you.  Great that you can call if you haven't heard from anyone...

I had some difficulties in the Fall and couldn't eat - a mixture of side effects and anxiety.  It was brutal trying to eat anything - just to get some energy back.  Are you able to handle fluids?  For a while chocolate milk was the only palatable fluid - so it became my staple.  Any foods or fluids that even slightly interest you ?  So tricky to find foods to eat - without them making us feel worse and also not eating really affects how we feel as well....🙄

Hope tomorrow is better .  Really appreciate the updates.  I see sun in the forecast tomorrow - not Florida - but at least sunny ☀ kim

Re: On the precipice once again

Posted by JamesT on Feb 17, 2019 1:47 am

Hello ccgirl‍ Kim,

I was just thinking of you the other day and wondered how you were doing and then happened upon this thread.

Been catching up and I'm sorry to hear what you are going through.  Clear pet scan in December and you should have been on your way.

You are lucky you acted on it right way to follow up.  I sure hope you hear back from Princess Hospital quickly and you can get on with the treatment.

Thinking of you.

Sincerely,


James



 

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