It’s Friday! I want to put a post up today because I know it’s been a while and people worry when I am not making posts. All is fine, it’s been a very busy week with a lot of routine medical appointments. Side effects from the new chemo are starting in and phrases like “mouth sores”, “high cholesterol,” and “follicular head pustules” make me certain that the person who called it “crazy, sexy cancer” was delusional about what cancer really is. There’s a lot that’s crazy but I don’t personally find a lot of sexy in it.
I’m getting help from my team in dealing with all of the side effects and have more appointments with more specialists in the next few weeks. For now things are stable and the next two weeks will proceed as planned. I’m still on Aromasin (25 mg/day) and Afinitor (7.5 mg/day). It’s the Afinitor that’s kicking in with my various problems. My tumor markers have shown a response to this combo over the last 6 weeks so we continue with it for now. I also received my monthly injection of Xgeva to strengthen my bones.
I wish you all a good Memorial Day weekend, especially our military personnel and their families.
The photo above is from 2002 by the way… where have eleven years gone?
I also want to mention that my last post, “There’s No Room for That in This (Six Minutes)” is the foundation for what is now a song titled “Six Minutes.” Over the past few weeks musician Doug Allen and I have been working hard on it and we’re almost done. I wrote the lyrics and he found the perfect music to bring those words to life. We are both so proud of the song and will be sharing in the future. His latest CD is available now and I just love it; it has two songs that have been on movie soundtracks… who knows where “Six Minutes” might land! More to come on this project.
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I get a lot of emails and comments with questions about cancer and how to help those who have it. Let me say clearly that I never think I speak for everyone with cancer. I do believe that asking questions is good, and even if you don’t think my answer is right for you, at least you might look at the issue a different way and clarify your own thoughts.
If people like this format I may continue to post letters/responses more often. I have often thought we need a grief/loss/illness etiquette column and I’ll gladly do my best to help.
This week I received the following excellent question.
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Hello…
I’m a 31 yr old only child whose mother was just diagnosed with squamous cell carcinoma a week ago.
I’m going home for the first time (parents in WI, I’m in IL) since the diagnosis and after reading this blog, I’m not sure what I should say to her. She is a pessimist by nature and already saying she would refuse chemo (the details of her condition and treatment plan are still in the works) so my dad and I need to figure out a way to keep her positive so she can indeed have the support she needs to fight it. I bought some colored paper and was going to list “reasons why you are a fighter” as well as post some motivational sayings/quotes on their bathroom mirrors, but the ones that came to mind now seem like the ones you SHOULDN’T say “you can do this,”,”stay strong,”
Do you have any suggestions on what I could write? Please keep us in your prayers, I am obviously terrified of the road to come.
—– J
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My response:
A few quick thoughts for you, J. I am so sorry about your mom’s diagnosis.
My first thought is that you all need time to adjust to the news. The way you react initially is not always the way you feel once you get your feet back under you. She needs a bit of time to not only adjust to the news but also to make this treatment plan. She doesn’t even know yet what she will be potentially recommended for treatment and yet you are expressing desires to coach her on how to feel.
Being supportive does not necessarily mean keeping her spirits “up.” Maybe what she needs right now is support for how she actually feels, not pressure to be acting a certain way. The best way to support her is to listen to her, and not try to tell her how she should feel. Let her adjust. And most importantly, respect whatever she chooses.
We love our families more than anything, but it’s her choice to make how she wants to live her life and how she wants to treat her cancer. It’s enough to deal with these diagnoses without feeling you are carrying the emotional burden of your loved ones on your back too. It will mean that she will know everyone rises and falls on her actions. That’s a huge weight above and beyond the physical and emotional toll she will be going through.
One of the most important things to do is to ask her how she thinks you could help her the most. I have a feeling putting up signs is not it, especially if you say she is a pessimist by nature. Signs around the house won’t change her attitude if a lifetime of experiences haven’t. Loving her, spending time with her, helping her with things that she might have trouble doing… those might be better. The key is to ask, really listen, and then respect what she says. Her needs might change (doesn’t want or need help now but needs it in the future) so you have to ask again during treatment.
If she decides to refuse chemo it will be tough, but it’s her choice. Chemo is very hard and is a quality of life issue too. Depending on what they are recommending and what the ultimate details of prognosis are, it’s important to respect what she opts to do while still encouraging her to see the benefits (as described by her doctor).
Those of us with cancer know everyone wants us to be “strong” and “positive” but it’s what we need to hear the least. It’s not like we haven’t thought of that already; it often just makes us feel like people are telling us how we should act because it makes it better for them if we act that way.
Negative emotions are normal with cancer, especially only one week after diagnosis… how could they not be? Not feeling free to express them may just be one more way she feels burdened by this disease right now.
Clearly you love her and want to help. The fact you are concerned with the best way to support her shows wonderful affection. The best way to do that right now, so soon after diagnosis, is to ask, and then respect what she says… That’s my best advice right now.
She will need time, but ultimately I think that she will be grateful for being allowed to express her emotions both negative and positive. I wish you all the best. Please keep us posted.
Link to Twitter
Thanks so much for this update, and congratulations on the song!! Fantastic.
Wishing you a peaceful Memorial Day Weekend…
xo,
Erika
It sounds like you have had a busy week. Hope the sun comes out in CT this weekend so you can enjoy some well-deserved rest outside in your beautiful yard.
AMEN, AMEN, AMEN!! I’m so tired of people telling me I’m brave, strong, or an inspiration. I’m *NOT*. I’m simply trying to stay alive. And, when I’m in a really bad emotional place, then I struggle with not meeting “their” expectations. Your advice is brilliant, I wish more people would read it. It’s all about Quality of Life.
PS-I know some girls on A/A combo who had mouth sores and were prescribed a special mouth wash which really helped. Let me know if you want me to find out more.
xoxo
Jen
As always Lisa, your thoughts resonate so! Your response to J about how to help her mother is a MUST READ for anyone who is dealing with a family member or friend who is diagnosed. Those early days are so, so difficult, and yes, I felt as if the floor dropped out from me. When folks told me to ‘be positive’ and ‘be strong’ — two things I happen to naturally be — it really, really angered me. I wanted, NEEDED to be pissed, sad, scared, and anxious. I did not in those early days want to just be strong. I needed to cry and to have my close people to just listen and hold me and know they would be there with me. Some stayed, some disappeared. Yes, a crappy way to learn about who you can depend on. But it was a process, with information, some time, and more information, and some really good cries I found my feet again, and regained my perspective and strength.
Your best advice — “ask, listen, and respect the answer” should be on a note card handed to every person in a cancer support role.
Thanks again Lisa for so eloquently stating what so many of us have felt. What a gift you possess!
Wonderful post, and I’m grateful to be reading it. Glad you’re doing as best as you can. And I agree, cancer is not “crazy and sexy.”
Such a sweet picture! Wow, will love to hear your song…… pretty darn amazing! And your advice to J is so helpful on many levels. The idea that we are the embodiment of peace and can bring healing to others by letting go of the need to control the outcome. I guess it comes down to accepting what is and having compassion for ourselves and others.
Wishing you a lovely weekend!
Congrats on your song! Also, I do enjoy the etiquette Q&A advice column and hope you can continue it.
Thank you for the update – and I can’t wait to listen to the song. And I found your answer to the reader extremely helpful, too. Thank you. xox
Great answer, Lisa! I hate it when people tell me I am a fighter and that I need to be positive. No one who has ever experienced cancer would say that.
I got Magic Mouthwash by prescription at Walgreen’s so the formula is in the system there. It works really well.
JoAnn
I have stage iv breast cancer in bone and liver. This is my 5th year of living with it. I was on the same treatment of affinitor last summer. It worked but I had to quit because of side affects. I was wondering if you can tell me how they are helping you with your side affects including high colesteral, mouth sores and acne? I just want to know what they know that my doctor here doesn’t know. Thank you for your help.
Gina
Hi… that is a shame to hear that they could not help you. Sometimes the effects are too much, but I would think they would exhaust all possible remedies before abandoning? Maybe some of this info will help.
The cholesterol I will have to let you know, my cardiology meeting is in two weeks. It would likely be a statin, a common drug that treats high cholesterol.
The head and skin problems will be first treated with topical antibiotics and topical antibacterial. If that can’t do it then an oral one might be needed.
There are multiple ways to address mouth sores including prescription mouthwashes (“magic mouthwash” it’s known as), topical steroids, or another option is a spray that coats the sore and allows healing.
Oncologists should definitely know about most of these things as well as specialists like dermatologists. Dose adjustment is often helpful too. I am not sure what dose you were on and if you could decrease but I am sure you tried that.
I’m so sorry to hear you couldn’t stay on it. Maybe there will be some info here to ask about.
Thank you for you advice. I love following you on twitter brecause you are so open about your treatment. I’m always curious to find out what else is out there. I did use magic mouthwash but it really didn’t help me. I was on 10 mg of afinitor and they put me down to 5mg. At 5mg it didn’t work. I see you are on 7.5. I would like to try affinitor again and suggest that dose. They did not offer me antibiotics or anything else for my mouth sores or face.I will ask about the spray. My platelets and hemoglobin went low too.
I don’t know if you noticed, but I read some cancer news letters and prostate cancer for stage 4 has 5 new drugs out this year! I’m so jealous. I have er+breast cancer and there hasn’t been a new drug for us in 30 years. The affinitor is the only new treatment. With all the pink ribbons and races we should have something new by now.
Oh well, take care and thanks for listening and thanks for your help.
Gina
Just to clarify: for sores it would be a spray or a steroid cream that you apply (since the mouthwash didn’t work). For my face I’m not doing anything right now, waiting to see if it is just adjustment issue.
For the head it’s liquid antibiotic and antibacterial. If you want the names I am happy to provide!
By the way there is now a 7.5 pill but what my oncologist does is alternate 5 and 10. That way if I need to go up or down in dosing I have the 5s and 10s on hand already. Not sure that most insurances would let you do that but just a thought.
Thank you for that information. If you do get the names of any of the medicines I would appreciate their names. I’m always looking for answers. I hope you had a good day today.
Take care,
Gina
Hi… The steroid for mouth sores is Clobetasol Propionate Cream .05% (twice daily, apply with Qtip, small amt.)
For head: Betamethasone Dipropionate Lotion .05% apply 1-2x/day for itch
And
Clindamycin phosphate topical solution 1% (apply to affected itchy area 2x/day)
For cholesterol they will not do anything because statins affect liver function and with the chemo that is not advised.
Hope this info helps. I have found the head to be better (probably adjustment to the Afinitor as I haven’t needed to use the Meds more than a few times) and mouth sore has taken about 4 days. Not fully healed but much better. They had me skip one night of the Afinitor and then do a lower dose for one night to try to spur healing.
What a perfect response. You are so spot-on in your advice. As for “crazy, sexy cancer,” I’m with you on that one. Crazy, yes; sexy, NO!
As always, thank you for the update and Happy Memorial Day to you and your family. I hope there is a couple of days off for you during the long weekend. I’m sorry about your new side effects and hope that you can find as much relief as possible.
Yes, yes, yes to your posting a letter with an answer. Your answer above resonated deeply with me. Especially this, “It’s enough to deal with these diagnoses without feeling you are carrying the emotional burden of your loved ones on your back too. It will mean that she will know everyone rises and falls on her actions. That’s a huge weight above and beyond the physical and emotional toll she will be going through.” Absolutely on target and brilliantly stated.
Lisa, what a wonderful post – I wish many people will read it and learn.
Ask.Listen.Respect – I couldn’t agree more! I’ve experienced “advice” the other way around, too – on a day when I felt great and declared “It’s still me, I feel fine, I’m not sick”, a (former) friend replied: “Just wait, the bad days will come”. Nobody wants to be told what to feel, think or do – whether living with cancer or without it.
I hope you’ll have a good weekend, and the side effects will be managable! I’m looking forward to listen to “Six minutes”. Sophia
With all due respect, I don’t think telling people with serious illness “to be strong” is necessarily a mistake. As always, it depends on how it is said, what else is said etc.
I think it’s an error to parse such a comment invariably as an unreasonable instruction or high pressure demand to be taken literally, nor do I think the comment is always (or even usually) selfishly motivated as I think you are implying.
I have made and received similar comments at similarly grave or serious times. What I meant or how I interpreted the comment was more as a hope, a wish, that the challenge being faced would not overwhelm.
Some people, when faced with life-threatening illness, withdraw and assume the fetal position. Others (like yourself ) devote their energies to carrying-on and doing all they can to ameliorate their situation to the extent possible.
For me, “stay strong” is just a supportive, loving wish that one’s friend will reside in the latter group.
Sometimes I want to scream when people continue to call me a fighter. I know they mean well and do my best to remember that.
Anyway, my apologies if this has already been discussed. Have you tried putting the Afinitor in empty capsules? This was rec by my oncology NP. I get them at Whole Foods. They are called “Vcaps” (Nature’s Way Vegetarian Capsules). Started on 10 mg and they were a tight fit but worked. Now on 5mg (10mg kicked my butt). The 5mg fits with wiggle room. NP told me to put the Aromasin in the cap with the Afinitor. Besides kicking my butt the 10mg was working. Next scans in July. Hope 5mg is doing as well as 10. Glad to know there is a 7.5.
Hi… Curious why you are putting the afinitor in a capsule? I hope it’s working for you too. There is a 7.5, yes. For ease of adjustment of dose, however, I alternate days of 5 and 10. That way if we needed to back off or increase we would have flexibility. I did this with Xeloda too… Some weeks I did 4 or 5 days at the higher dose and only 2-3 at lower.
There is some speculation that the aphthous ulcers (mouth sores) may be related to direct contact of the pill itself with the oral mucous membranes. If I recall, I think somewhere and at sometime I read in the directions not to touch with hands or let others come in contact with (yet, I’m going to swallow it) this pill. Also don’t taunt it and back away slowly-ok, I made up the last part. Anyway, my oncologist had told me when I 1st started on Afinitor that others were putting the pill in a mini marshmallow to keep it from touching the inside of their mouths. I tried this but it wasn’t a perfect fix. I only really had one bout of ulcers then went to the capsules. The capsules melt in 20 minutes and all was ok’d with specialty pharmacist. At this time I will knock wood and say I’ve had no further issues with ulcers.
Amen.