I appreciate the input. It’s just a process to move from seeking a cure to accepting a chronic condition. Her pain is better - the radiation seems to be helping - and she has 5 more treatments next week. When she was admitted to JHU, they actually put her on a suicide watch initially, based on comments she made about her pain level and not wanting to continue. Thankfully, she is no longer in that level of pain.
Work is better - I have a great employee helping me 5-6 hours per day. I still hope my friend can return at some point, but that’s not the priority right now.
Both my Dad (non Hodgkins lymphoma, don’t know staging) and my DH (stage 3 colon/rectal) have been diagnosed with cancer. Both are really optimistic, goal oriented, positive energy types, and both clung strongly to the concept of “cure.” DH in particular wasn’t interested in “five year cure rates.”
Dad has been cancer free for 36 years, and DH will hit year 12 in August. The docs at MD Anderson told him he could consider himself cured and that they didn’t need to see him again for follow up.
With the OP’s friend being a stage 4 cancer, it’s probably more realistic to have a mindset of finding quality of life while having cancer.
OTOH, wasn’t Lance Armstrong a stage 4 cancer patient?
It really depends on the type of cancer. Armstrong had testicular cancer. Even though it spread to his brain, it was still curable. This is definitely not the case for other cancers.
After 12 years NED you can call yourself “cured” if you prefer. I think it’s a lot harder to think of yourself as “cured” if you are still having periodic scans for possible mets.
Definitely depends on the type of cancer. For my type of cancer, the standard is “major molecular response,” which means that you’re under the detectable level of the test, not that it’s gone. Some people are able to go off the daily oral chemo after two years in MMR. We found out that I don’t fall into that category, because my leukemia came roaring back after being off meds for three months following my heart attack.
So while this had always been considered a terminal illness, I’m here 16.5 years later. When I was diagnosed, the life expectancy was 3-5 years. The meds to treat this had been FDA approved a year before my diagnosis. It has been a serious game changer. I still get tested every three months and take oral chemo, so it’s always “there,” but it’s less intrusive than it used to be.
Remember that the survival rate is a historical average and may bear little resemblance to the effectiveness of current treatments.
I hop OP’s friend continues to get relief from the pain, which will help her body focus on healing. I’m glad she’s got a good team working with her now, and hope she has a good response and pain-free days ahead of her.
Very key point. The immunotherapy I’m currently on had not even been invented when most people in the cohort who make up the survival rates for my disease were diagnosed and treated.
Visited yesterday, she just finished a series of 10 radiation treatments to shrink the mass on her spine. It helped, back pain improved, bur she is experiencing side effects of extreme fatigue and very swollen legs and feet. She is seeing yet another dr this week to address lymphedema.
My concern is she is so immobile. She is literally living on a loveseat with her feet on an ottoman. Eating there, sleeping there, etc. From what I can tell, she only moves to use the bathroom, and even that is challenging. Simply getting her legs off the ottoman and getting upright is hard.
My gut instinct is she should try to get up more and walk more, and from what I see online, moving should help with the fluid buildup. But yesterday was a bad day, so I said nothing.
There are massage techniques that may help (you can find them on-line) and compression garments.
I would look up the techniques to get an idea of how to do it and what is involved but would wait for a trained therapist to personally teach technique.
For serious medical conditions, it is always a good practice to get at least 2 opinions. Specialists in a particular cancer are helpful, but few oncologists treat only one type of cancer. A dedicated cancer hospital does not necessarily mean better doctors, but they are very good at support services and offer expanded access to experimental treatments and protocols. Metastatic melanoma is not 100% curable; not even close, to be honest.
Will she be able to rent a contraption that massages legs - like the ones used in hospitals to prevent blood clots? She should check with her doctors to make sure if that is OK.
Now that sounds interesting! I will suggest she ask. I am concerned that the massage techniques wiuld be hard for someone who lives alone, getting compression garments on might also be a struggle. So much of this is made harder by living alone.
No cancer update until she has had 3 more immunotherapy treatments, so that takes her until late March.
These are expensive to buy outright ($$$), but I heard that some outpatient surgery centers can rent them. Rapid Reboot, Air Relax are a couple of names I know. They are generally very easy to get on - side zippers, so no pulling or struggling required. There are also cheaper calf sleeve devices, but they are not as good as the sequential massage sleeves.
Going back to cures/remissions/chronic… A friend (MD also) was diagnosed with a type of cancer most often found in older women more than 15 years ago. Back then the 15 year survival rate was zero. I will always wonder how many died just because their age caught up with them. Friend had the surgery/chemo et al and all of her then frequent, now annual? testing has been negative. Hers fits “cured”. Thank goodness for evolving treatments that change the survival rates.
OP- your friend, however is in the midst of the treatment stage. It is difficult to see the side effects and not yet know if the treatment works. Keep being a friend and keeping your work/worry stresses manageable.
OP - I’m sure it’s been said, but you are a true friend. Your love for your friend is truly touching and inspiring. When faced with cancer, it really matters to have someone at your side.
Thank you, you are very kind. She is in a tough spot and is relying on her friends for everything from food to research to transportation. Unfortunately, no one was able to take her dog, an energetic male golden retriever with digestive issues. He has been returned to the breeder who is placing him in a new home. I really wish I could have fostered her dog, but not realistic.
@rockvillemom — it’s important to know your limits and you already are doing a whole lot for your friend. I’m sure the breeder will find the dog a loving home.
I’ll second the idea of wearing compression hose or even wrapping her legs to prevent swelling. And there are massage therapists who know techniques to combat lymphedema. They aren’t hard to learn, so your friend, her family, or even you could learn them and perform a little massage on her legs. If she is ready to do any of this. I am sorry she is dealing with this new issue. (H had/has this issue. He has been managing it for more than twenty years.)
Are there other patients or patient advocates with whom your friend can interact to get information on side effects like this?
I think it’s a lot harder to think of yourself as “cured” if you are still having periodic scans for possible mets.