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GloHo

@melissa
A little trick I learned…next time you have a scan scheduled and date set, immediately ask for an Onc telephone appt to be scheduled no longer than a week later - everything is pre-booked!! I can’t believe how long you’ve been waiting!! I also mentioned how stressful the waiting was to my Onc (with tears? Maybe). I think that’s how I came up with my little pre-booking plan. Waiting was way too stressful!! Well…at least you now have a date and can go out and do fun things without worrying about missing “the” call. So get out there and enjoy yourself!!

GloHo

@Strongwoman
WOW! You’re full of it today…insight and wisdom that is!🤣🤣
How are you feeling? Storing up your energy for your TO trip on Saturday? Has nausea and fatigue improved?

Strongwoman

@melissa I can see you are a little hesitant with I feel the appt time to go over the results...is that is what is causing some trepidation?   I am thankful someone did get back to you though.  Use that gym, enjoy fresh air and spend time with family and friends.  The time will go by quicker than you think! 

@jmbarrhaven That sounds like a great book. Thank you for sharing.  I think I will look for it for myself. Thank you. 

@Taita Thank you for everything you have done for Ovarian Cancer and the advocating you have done.  You are an inspiration and if ever your family does do something with all of the ways you have contributed in some way along your career and life, I will be sure to grab that book.  If they keep it all to themselves, I respect and understand that too.  
I am glad you are home in the comfort of your home.  Thankful that your family is behind you 100% and that you are at peace with your decisions.  This is a hard and long road and you have been inspiring.  I am saddened to hear your hubby is having some complications from his hip surgery and in that rare category for things to go wrong.  I wish for you both to spend your remaining days together in whatever way you can and decide to do. Whether that be in silence, reminiscing or in laughter or tears.  That time is yours and yours alone.  I wish you peace and a pain free transition into this last phase.  I imagine in some ways it is tough and can't imagine how difficult it may have been to post what you did today.  Courageous is what comes to mind.  Peace be with you always, my friend, Kim 

@Tinazzie Thank you for your kind words and I was happy to see you post.  I was wondering how you were doing.  I imagine it has been difficult dealing with two primary cancers and navigating it all.  We are here for you anytime you want.  My thoughts will be with you. 

@GloHo Yes, that is how it goes some days. My mind is always whirling and why I need the sleeping aide at night.  I would never sleep without it. I am fatigued from Monday's episode but okay.  Learning how to put myself first.  Like today I went grocery shopping then went home instead of going to my girlfriend's.  I knew I was fatigued and should go home.  I am getting smarter as I go along. 
No nausea which is good.
Yes, I am conserving my energy for Saturday and plan on faking if I have to so that hubby has a nice day.  He is quite stressed which concerns me.  Tomorrow is another day and he is off as of tonight until Tuesday which will be a welcomed break for him.  
How are things going with you?

GloHo

@JoanEG
Scanxiety…I never knew what it was until I started this journey. I am sure that is true for most of us. 

My scans are usually available same/next day on the health portal…so I take a look to give me time to internalize and react to results and to prepare my thoughts for my Onc appt. (This is not for everyone.) She was quite concerned about me at my last visit given my progression results…asking if I was ok…if I was ok to drive home, etc. Caring and kind. We were able to discuss what it all meant and what next steps are and I was able to be present for the conversation and not be distracted by the results because I had already worked through it all at my own pace prior to the appt. 

I love what you’re doing with the family tree for your hubby. Great idea!

melissa

@GloHo @Strongwoman @JoanEG it's absolutely nuts to make us wait this long. Scan done Feb 9th, and now, only cause I called will I speak to MD in 2 weeks. So that makes it 5 weeks to get results?? 

Unacceptable. This is only giving me more stress as I'm telling myself, well the scan must be clear if they are going to make me wait this long!

I'm going to call the nurse again tomorrow. I can't accept waiting 5 weeks. No. Also because I want to go to Florida so I need to know if I am still in remission.

GloHo

@BellaDonna1959
Go girl!! Self-care is so very important. Great to hear how wonderful your extended care team is!! 

GloHo

@jmbarrhaven
Sounds like an interesting read. Thanks for the recommendation. 

JoanEG

@melissa 5 weeks waiting for scan results is totally unacceptable!  

melissa

@JoanEG 100% last time I waited 5 days for good results. I just called and left another long message for the nurse lol. I said last time I waited 5 days, this time I'm expected to wait 5 weeks?? I said.. do you know what this is doing to my mental health.. I said, please speak to the MD if you haven't done so already, and if she says I can wait another 2 weeks then fine. Rant over sorry. You can't tell, but I'm using my imaginary powers to suck some of your scanxiety away from you

JoanEG

@melissa darn I sure hope they get back to you with something sooner.  Now that I’ve had the scan oddly enough the scanxiety is over so you must have sucked it all away!  Thanks!  I’m sending my imaginary powers to get your scan results tomorrow!

GloHo

@Taita
Always nice to hear from you. 

I didn’t know that femur fracture was possible with hip surgery. My eldest son fractured his in a pick-up hockey game and my husband broke his in two places. Amazing how well they fix these things up these days. 

Glad you were able to get back into your condo…it has been quite a while. I wasn’t aware of lift services. I’m sure you’re a lot more relaxed and comfortable being at home. Sure hope they get those elevators fixed for good…and soon!!

I am approaching 5 years (two years with NED). I hear you re how much your body can take. My mind has been there. 

You are truly an amazing woman. Your family adventures over the last few years have been inspiring. Wonderful memories. 

May the love and support of family and friends embrace you and bring you peace. 

GloHo

@Strongwoman
I heard back from the Onc…we are going ahead with the clinical trial. 

I have not yet heard from PMH to confirm Monday’s appt. I sent an email to someone(?) this afternoon so hoping they will call tomorrow.
I’m ok with Phase 1. I figure every drug has had to begin this way…some work, some don’t. I’m being positive and am hoping that this new drug is what I need. If not, I have a couple of standard of care drugs to fall back on. If it doesn’t help me…maybe my participation will help inform decisions for those that follow in the future. 

Weekly Paclitaxel has been ok for me. Constant runny nose. Hair thinning has been pretty even over the whole head - not patchy - no need for head cover. As far as bloodwork, the only real concern I’ve had is my hemoglobin decrease - just below normal and Onc not too concerned. My neutrophils and platelets have remained stable. Of course there’s fatigue, but I am no longer certain whether that is drug- or disease-induced. I also fall asleep if I sit too long (reading, phone games, tv)…I don’t even feel tired most of the time…just doze right off and still sleep at night!! QOL, overall, has been good but I do pace myself. Oh yeah, my fingernail beds recently started to feel bruised - another side effect. 

Rest up and try not to overdo it on Saturday. 

GloHo

@Strongwoman
Also, no neuropathy. 

Strongwoman

@GloHo That is an amazing Onc to be so concerned with you and how the information you were receiving was affecting you. To the point of being concerned about you driving home. So caring. Gives one faith in humanity.     As for the news itself, it's a process and only you can process through your own information.  We are here if you need anything along the way.  I feel for you.  Kindness is being sent your way. 
It seems that lately more and more of us are experiencing delays in either receiving appts or results from testing which is matching the news and the info that a lot of doctors, etc are experiencing overload.  I don't know what happened as I used to receive info for testing quite quickly before and within the last few months, it seems to have been worsening.  I received the okay from MyPocketHealth yesterday that my scan results are in which was done in the beginning of January.  I already asked for the report at my last Oncology appt but it is still ridiculous.  Along with waiting in an "inbox" to receive instruction as to whether I will be put on this physician's roster to see and/or do surgery or not.  This Monday will be 3 wks. 
Good to hear about the Trial and going forward.  I hope someone from PMH gets back to you soon with a start date.  Thank you also for the info on how you feel while on Paclitaxol.  It helps to know I have resources available to look at should I get that far in my journey.  Not that I plan on going anywhere, I simply don't know what the plan looks like anymore. 

@JoanEG I am glad the scanxiety has eased and that you are feeling better now that it is completed.

@melissa It is frustrating what you are going through.  I like your plan on calling and insisting on the nurse obtaining info sooner than 5 wks time.  Hang in there!  In the meantime, go take all that frustration and bust a move at the gym. 

melissa

Good morning ladies

I hope everyone slept well. I had a conversation with a friend yesterday evening about waiting for test results. I think she was even angrier than I lol .

@Strongwoman I didn't realize you as well have been waiting for scan results as long, actually longer than me. How frustrating. I don't want to go through this again. When I finally do speak with my dr I'm going to very politely but diplomatically tell her I'm not waiting this long again and we need to develop a system for scans and delivering results. Wish me luck lol.

@GloHo I'm glad you were accepted into the trial. I have not been in one, but have read about many and the take away seems to be researchers and doctors are beyond picky with inclusion/exclusion. How are you feeling about this next step? 

GloHo

@Strongwoman
I use Connect My Health portal. The boundaries were changed awhile back and I had to change from My Chart. I receive my scan results very quickly. Of course, that may also depend on how quickly the results are processed at the hospital. There seem to be a lot of different portals out there. If I participate in the trial, I will have to use My Chart again. My CA125 results used to come back while I was in my Onc appt…now it is much longer so I am thinking about getting bloodwork done the day before appt. Quite inconvenient..time, parking $, etc. but I’d rather have the results at my appt than not so I’ll probably suck it up. 

I guess after five years, I’ve had time to gradually process everything. Still very emotional - and I give myself time for that -
but I pretty quickly move onto next steps. Am grateful that treatments have brought me this far along. 

GloHo

@melissa
I haven’t quite been accepted yet (officially). Waiting for my assessment appt - hopefully Monday - and then I’ll see if there are other hoops to go through , ie, if I need a specific marker to participate, etc.
Yes, this will be my second trial and the rules are quite stringent. Will be interesting to see what rules are in place for this one. Truth be told, I found the waiting for bloodwork then Dr then a chemo chair took up a good portion of the day, then there was the required in-treatment time on top of that. I found it very difficult to cope with the waiting and felt that I was just a number in the system. I wish the process could be more seamless but all of the waiting time is part of the process and necessary in order to get the ok for treatment to move forward….still it irked me! Hoping I’ll be more patient this time around 🤣🤣. 
It is Phase 1 which is a dose escalation exploration for first in-human administration of the drug. As I said to @Strongwoman, every drug has to start at this point…and participants are needed in order to ascertain the efficacy of the drug. We hope for the best. Who knows…this may be the drug that works for me. If not, my participation will help inform future research of the drug. 

Strongwoman

@GloHo I am curious, how many trials have you participated in?  You are great for sharing what you find and documenting your journey.  It is an invaluable to those that may choose one of those trials or treatments down the road.  
Processing your prognosis takes time.  I know for me, there are days I don't think about it at all and other days I do.  I try my best to stay in the present. Some days are wistful and teary and others laughter and joy.  Be patient with yourself. Continue your journey.....we are here when you need us. 


@melissa Good for you!  Glad you slept on it and are being actionable today.  I called where my surgical referral went for myself this morning as well.  All I wanted to know is where I might be in the queue to ease my own anxiety. The receptionist stated that he spends most of his time at the hospital and not in the office and that I am more than likely looking at early April at the earliest.  I can live with that.  He still has not had time to triage me in his queue but she is aware of it and will bring it to his attention. That's all I can ask for. Now I know that probably nothing will occur this month appt wise. Insert breathing slowly in and out here. 

My elderly Aunt has just called and needs a double heart valve replacement/surgery done. I am calm and collected and not teary like I thought I would be.  Perhaps its her age and knowing that she has always been on the edge of leaving us that I am not as upset, currently?  Who knows.  She is shocked. We will weather this storm too......seems to be the month starting off.... Glad the sun is shining!

GloHo

@Strongwoman
First, sorry to hear about your aunt. Another stress…oh boy. 

Glad to hear you were able to get an approximate time frame. March will go by quickly. 

I have just done one other study - Artistry-7. 

I have just spent the afternoon trying to sort out this PMH stuff. Am going to get my thoughts in order before I write anything about that!! I will probably put something under clinical trials about the initial process but am going to need to vent a bit here first 🤣🤣. 

melissa

Hello ladies,


So after leaving a long emotional message for the nurse yesterday she called me back this afternoon. 
She said she would read me the scan report but that my dr is the one who will have to explain things to me in detail etc etc.

She said the report said no evidence of recurrence or metastatic disease. She also said to keep this between her and I which I replied yes of course. So I can now relax a bit and wait for my next appointment.

@Strongwoman glad you got some sort of an answer and are ok with it

@Lorraine5845 sorry you are not feeling well after round 3 of immunotherapy, but hey, it sound promising that your car 125 is going down after each treatment. Best of luck with round 4, hopefully you can get some of your appetite back. Is your lack of appetite due to nausea?

JoanEG

@melissa woohoo now you can relax!  Obviously the nurse “gets it”.

Lorraine5845

Great fantastic news for you.  👏🏻

funny this afternoon I got a call from oncology pharmacist and now my calcium is too high.  Now I need to do a treatment tomorrow to lower the calcium in my body. I didn’t know that too much calcium can cause issues with muscles and your heart but I see you can also have the other symptoms I ve been experiencing 

melissa

@Lorraine5845 I've read that clear cell can cause hypercalcemia ( high calcium )  but I haven't experienced it yet. Elevated calcium can make you feel like your muscles are very weak too, and like you mentioned, GI symptoms. At least it's been detected and now they will fix it!

@Strongwoman I forgot to comment on your aunt. That is a big surgery sorry to hear that. I know sometimes they can do it minimally invasive? I can completely relate to your reaction about feeling calm about the whole situation. I think being in the position we are all in it just gives us the edge to deal with things like a boss . I accompanied my father today to meet with the surgeon about his prostate CA and I was completely cool, calm and collected. For once in my life lol.

@JoanEG, yes, the nurse gets it, it might have helped when I told her I was a nurse too, and reminded her of the interactions we have had.

Lorraine5845

If I can reduce some of the side effects it would be great. Thanks Melissa 

GloHo

@Strongwoman
I am so confused!!! 

I wasn’t hearing from anyone at PMH so I went online and found some promising leads that I thought might be able to help me. I emailed about 7 different people, including the contact name I was given by my Onc (only first name - but with extensive research I was able to find her last name - only to find out she was not in today!). Everyone was on holidays returning on Monday or on leave. One woman got back to me. Poor thing probably regretted it. Not that I was nasty…it just wasn’t her area of responsibility to help me and I kept hitting road blocks and emailing her back for more help. Wonderful woman that she was, she finally sent an email to the senior clinical trial coordinator. Things then got rolling. 

Someone then called me…explaining that she wanted to help me so I didn’t have to send anymore emails 🤣🤣🤣🤣. I found out that my referral was only received a day ago and it was with the review board. 

Then I found out that there may not be a trial for me…she could not tell me for sure and she could not provide me with the clinical trial info that I asked about - their policy. You do not know whether or not there is a trial for you until you go for the assessment - the Dr wants to meet you first! So, they make a stressed out cancer patient drive 3 hours there and 3 hours back for what could be nothing! How does that make sense?
Someone else called me with my appointment info - YAY. I have to go for blood and ECG before the assessment. And I think I’m seeing a different Dr than the one my Onc mentioned. 

I am also using their accommodation support - they initiate the paperwork so you can start getting your accommodation booked and submit for reimbursement later. It is going to be a very long day and I’m not sure driving home same day is a good idea. Hotel gives a medical rate - this will be reimbursed. Parking is 1/2 and we have the pet fee - these are out of pocket. 

I would not have pushed so hard if I wasn’t told that they could see me on Monday. I’m sure the process is quite efficient and not delayed under normal circumstances. This was just my experience given the information I was working with. 

So…they may not have a trial for me? Why did my Onc give me specifics? 

Now I will be calling my Onc on Monday morning to let her know what’s happened and to find out what is really up. She used to work there and has contacts so I’m not sure who she spoke to about my case. And, if necessary, she can run interference if my referral needs redirection. 

I did laugh a lot during my calls with these women…they were very personable and understanding. I was not angry…a little frustrated…but understand they have a process to follow - not their fault. I was relieved that things were starting to come together. 

Ahhh…that feels better. Dumped from brain. Room in brain now to look at trying to document the process for others. 

Thanks for listening.

Strongwoman

Ooh @GloHo How emotional and frustrating that must have been.  What I can tell you from my experience at PMH...is this....the doctor did not have great reviews at all that I was to see.  I waited a long time for him to enter my room after all the preliminary nurse kind of stuff but....what he came back to me with was...hope and options.  I wasn't expecting it at all.  I thought it would be a simple " you are ineligible for the trial, see ya".   Be patient and I will be looking forward to seeing how your appt went once you get there.  I was quite impressed with mine.  It is what started the ball rolling for the rest of my team to get going with some things. For that, I am eternally grateful as they were out of options/suggestions for me.
I vaguely recall why I was ineligible as in the end it didn't matter.  I was good with what information and resources I did receive.  

I will be thinking of you today and hoping you obtain the info you are searching for. 

Strongwoman

@Lorraine5845 You, my fellow Teal Sister, sound upset and a bit frustrated.  I am sorry you are feeling this way.  I will do my best to explain and perhaps it may help.  We have Calcium in our bodies as it plays a vital role not only to muscles that we use every day but our cardiac (heart) as well.  Having too much calcium in the body is not good just as low calcium is not good.  Forever trying to find the balance.  I believe the heart medication I am on for my blood pressure is what is called a calcium channel blocker.  Please be assured that your team will get to the bottom of it and will monitor you along the way.  It is why we do these monthly blood tests so that they can keep an eye on any level that may potentially go out of whack for a number of reasons.  Your team will get you back on track and all will be well with that soon.  I hope that comforts you a little.  
How are you doing otherwise along your journey?  
Were you able to do anything for yourself or with others this past weekend?
Thinking of you and hope you will post again soon.  
Take care of you! 

Strongwoman

@melissa Will be thinking of you today.  Hope you get somewhere with seeing or speaking with your doctor.  I am thankful that the nurse was compassionate and was able to give you some information.  That must have been comforting knowing.  If this is true what she told you, how are you feeling about being NED?  Have questions as to "what's next"?  I think it is wonderful.  Go do things and go to the gym. Be with friends and family and "live" every moment.  Have fun is basically what I am saying. And enjoy. It is wonderful place to be receiving that information. Basque in the glory of it. 

Strongwoman

@JoanEG  If I recall, this is your surgery week or next week is?  How are you feeling about it?  You feel you are as prepared as you can be at home?  Keep yourself busy and rest a bit.  Make sure you are as healthy as you can be going into the surgery.  We are all here for you before and all the butterflies that go with it and for the after and those moths you need to clear away so that you can emerge again.....a new person with adversities to overcome. You will do it.  One day at a time and so on.  Plus you have us Fab Ladies to help you along the way.  
In the meantime, go enjoy what you can and have fun with your dogs.  
Take care of you! 

JoanEG

@Strongwoman thanks for the encouragement.  Surgery is next Monday.  I am concentrating on eating well and getting lots of rest.  I’m trying not to stress about it and think of it as just another hoop to jump through.  I appreciate the love and support of my Teal sisters!