Hi everyone —
Just another update about my niece.
She wrapped up Round 2 of chemo and ancillary therapies at CHOP two weeks ago. She was able to get back home to see her little sister and grandma for roughly ten days. By the time that she had to go back to the hospital for her third round, her lab numbers were looking good to very good and her appetite and energy came back. She has helped her parents decorate the Philadelphia apartment that you all kicked in for. There is quite a bit of art work in the kitchen and several boxes of books that will soon be read.
Claire is starting Round 3. If I understand things right, the goal of this round is continued suppression. The cancerous cells are not readily visible at the moment in her labs. This round is to keep it like that.
Claire has had several blood and platelet transfusions during her first two rounds. The transfusions alleviate pain symptoms and keeps her healthy enough to tolerate the chemo. Patients with leukemia tend to need a lot of blood products.
I’ve been giving a mix of whole blood and platelets at the local American Red Cross collection center. I stay local for whole blood as I bleed fast. They like me as I’m O+ and CMV- so my blood is quite versatile. I head into Raleigh for a 7:00AM Sunday morning slot to donate platelets. I reward myself with coffee and hipster donuts afterwards. I know that my niece won’t ever get my blood donations. Instead, I’m adding to the pool so that someone else’s niece can get the platelets that she needs. I’m adding to the pool so that a burn victim gets the whole blood that they require. I’m adding to the pool so that someone’s grandson gets better and can be swung from one side of the room to the other in a week or two after the transfusion.
Kids with cancer need blood. The process is not particularly painful and the Red Cross or any other local collecting agency will give you cookies. That is a good trade; an hour of time to do good while also getting cookies. That is a damn good deal.
So please, sign-up to give blood if you are healthy enough to
Mike Pompeo’s War On Iran
narya
How much difference does CMV make? I discovered this year that I’ve been exposed to both that AND Epstein-Barr, though I never knew about either and couldn’t tell you when it happened.
JPL
Thank you so much for the update.
BlueNC
@narya: I was told that CMV- is good for preemies and others who might be immune-compromised. So CMV+ blood for “regular” recipients and CMV- blood for special needs.
ETA: Best wishes to Claire and family!!
Nicole
I had a friend who was O- and CMV-, and he was constantly being chased down by the blood centers for donations because his was perfect baby blood. ?
One of the things that aggravates me about medicine being slow to change, is that people with hereditary hemachromatosis, which is iron overload disease, need regular phlebotomies to keep iron levels normal. HH blood is perfectly good to be used; it’s a hereditary condition, not an acquired one, but a lot of blood centers still won’t take it because once upon a time they weren’t sure if it could be acquired. So, medical facilities get to bill insurance companies for a phlebotomy, and then the blood is just thrown away, since if it was used for anything they wouldn’t be allowed to charge for it.
Nicole
And thank you for the update! It’s very good to hear that the next round of chemo will be preventative. That’s a good word in cancer treatment.
Icedfire
If and when the FDA joins the 21st century and allows current science and technology to overcome dogma, I will be happy to donate my O+ blood once again.
Until that time my husband and I are banned from donating unless we abstain from sex for 12 months, despite both being on PrEP and regularly testing negative for HIV. Blood donation is one of the more socially acceptable ways to discriminate against the gheys in 2020, dontchaknow?
It’s infuriating, since I’ve received transfusions during a life-threatening medical episode and would very much like to pay that forward.
Percysowner
I wish I could give blood, but I can’t. Like 25 years ago I tried to give blood and threw a false positive on the HIV test. I went to my doctor and he proved it was a mistake, but the Red Cross wants nothing to do with my blood from here on out. I feel bad every time there is a call for blood.
David Anderson
@narya: From my understanding, CMV+ for adults is a nothingburger. Most people who have it never knew that they became infected.
For babies CMV+ is a potential bad big deal.
CMV- is belts and suspender safety measure.
JanieM
Great news that she’s doing well so far. May it continue that way!
You also made me chuckle with your “quite versatile” blood.
My mother needed several transfusions last year during the last 8 or 10 months of her life, and I learned, at least as a headline, how complicated it can be to get the right match — turned out she was very hard to match. After she went into rehab, there were two occasions when they took her blood on a Friday morning (their usual day), decided she needed a transfusion, and then couldn’t get blood for her right away. And then, since the “type and crossmatch” sample was only valid for so long, they had to do it all over again on Monday. My sister, who’s a retired nurse, said to the nursing home people, “Um, why don’t you take her blood on Wednesdays instead of Fridays?” “Oh, that’s a good idea,” they said. I sat there and tried to suppress my eye rollery.
I used to give blood now and then, but once my blood pressure was so low that they wouldn’t let me give, and another time I fainted afterwards. So I stopped doing it. I’m grateful to everyone who does, though.
Gin & Tonic
As an O- guy with good veins, I’m on the call list (again, now that babesiosis is not disqualifying). Approaching my 100th, I think. Makes me feel good.
WaterGirl
I’m so glad to hear that Claire got some time at home, so good for everyone but maybe especially for the sisters? Also relieved to hear that Claire got to feel good for at least a little while because I’m sure that memory will give her hope as she goes through the next round. Thanks for keeping us updated.
HumboldtBlue
Nice to hear some positive and upbeat news.
Keep kicking ass, Claire!
Benw
Good news!
Elizabelle
Great news about Claire. Will think of her, happily, once date for my next donation rolls around.
@Percysowner: Dang. I hope that is still not the case. Have you checked recently re blood donating? It seems the Red Cross has become slightly less stringent in some policies.
Serving in Europe (mad cow land) has sure taken too many military donors out of the mix.
Roger Moore
I would recommend that people who can donate platelets only rather than platelets and whole blood. If you donate both, you’re limited to donating once every 56 days. If you donate platelets only, you can donate every 14 days, or every 7 days if you’re making a directed donation (donation for a specific patient). There’s a limit of 24 platelet donations per year, but that’s actually based on the small amount of whole blood that you lose to the machine and the need to test your blood for pathogens. Plus many people can give two or even three units of platelets in a single donation. The biggest drawback of platelet donation is that it’s time consuming; I takes me a total of almost 3 hours between the beginning of the screening process and walking out of the canteen after the mandatory 15 minute post-donation wait.
Roger Moore
@Icedfire:
Not that it makes a practical difference to you, but they recently reduced that to 3 months rather than 12. Same thing for other things that were considered high risk for contracting HIV, like tattoos, body piercings, and sex with prostitutes. They also relaxed the rules related to mad cow disease; people who lived in Europe apart from the UK, Ireland, and France are now allowed to donate.
Icedfire
@Roger Moore: My hope is that someday they will stop paying lip service to implementation of a behavioral risk assessment and actually put one into place. It’s difficult not to feel embittered by the idea that a straight man having frequent unprotected sex is considered so much lower a risk than me as a married gay man that his behavior isn’t even assessed.
I do hope that this switch to 3 months isn’t only temporary during the Covid crisis, and that it leads to a more equitable and realistic policy. I won’t hold my breath, though. I do appreciate that you didn’t advocate that I lie in order to donate, though!
Bluegirlfromwyo
Some much needed good news! Hugs to Claire.
wvng
Great news about Claire. Could there be pictures of the apartment?
Roger Moore
@Icedfire:
I doubt the change in their policy is because of COVID. At least where I donate, COVID hasn’t done much to hurt donations. In the spring, they actually had an increase in donations because donating blood was a valid reason to leave the house when everyone was being told to stay home. My understanding is that they’ve shortened the wait because they’re confident the tests are good enough to catch HIV 3 months after infection.
Unfortunately, I don’t think they’re likely to go to a real behavioral risk assessment in place of the current system. Even assuming you have a better system, it’s going to have to ask about people’s sex lives in a lot more detail. It’s hard enough to get people to answer honestly now*; asking probing questions about everyone’s sex lives is going to get more lies and scare some potential donors away.
*I would never encourage anyone to lie on the questionnaire in order to donate, even if they believe they are safe.
wmd
I really miss giving blood, but my oncologists tell me I can’t any more, even though I am no evidence of disease for 3 years after completing treatment.
Schmendrick
@Roger Moore: I am really glad you shared that information. Decades ago Mrs. Schmendrick and I were regular donors until we suddenly became ineligible due to the time we spent (as contractors) at Ramstein AFB (where we had access to the commissary and the UK beef which was considered a risk factor for CJD). I checked to see if the rules had changed several times, but after about 25 years I gave up. Now it looks like I can donate again. Can’t wait to try hipster donuts.
Wapiti
In Seattle, Bloodworks Northwest is doing Covid antibody screenings through the end of October. I think they’re trying to id a candidate pool if antibody plasma becomes a treatment.
Mel
Go, Clare!! Many long distance hugs to Clare and her family.
Nicole
@wmd: Did you have a cancer of the blood? A lot of places will take blood after a certain period of time following treatment without recurrence, but I think leukemias might be a lifetime ban (even though there’s no evidence of cancer ever being transmitted via blood donation).
Or is it because you had lymph nodes taken out? I’m down to one arm I can have blood drawn from because they took 10 lymph nodes from the other side so I am to leave that arm alone for blood draws, blood pressure, anything that might trigger swelling.
(And the remaining useable arm has TERRIBLE veins. I went for my cancer checkup this week and the tech told me to just start telling future techs to use my hand for the draw and not even bother trying to get the vein in the arm.)
Sure Lurkalot
I wish continued good news about Claire.
It’s good to hear so many of you donate blood. I’m the much desired O neg but don’t weigh enough. COVID and election anxiety haven’t helped.
Mel
@wmd: I can’t give blood either (autoimmune stuff and medications for autoimmune stuff). It’s frustrating.
Some Red Cross chapters have “volunteer from home” positions that can work for people who are looking for a volunteer opportunity but need to isolate and avoid direct contact.
What’s available varies from location to location, depending on what the local needs are at any given time, but it might be an option for those who have some time free but can’t donate blood anymore.
dnfree
Thank you for keeping us updated. I used to give blood, but I had a condition that means I can never give blood again. Apparently my body has so far kept it in check, but if my blood were given to someone in compromised health, their body might not. Pretty strange. There was an article in the New Yorker a few years ago by Mukherjee. Like others here, I’m sorry I can’t. There are so many people who aren’t able to give blood for one reason or another. It puts a bigger burden on those who can.
laura
The good news about Claire and her family is so nice a way to end a week.
Spouse is a frequent donor of plasma and platelets because you can donate at least once a week, subject to annual time outs. He’s up to around 600 donations now. Every so often he’ll get a call that a donation he’d made was delivered directly to an OR for use. He stands a bit taller when that happens. I was a whole blood donor until I was drummed out for being and old and had been donating since 17. It’s an easy way to do a little bit of good for our brothers and sisters.
Roger Moore
@Schmendrick:
You should probably check with your specific donor center. The rules I sent are from where I donate, but other locations might use older rules.
wmd
I had a squamous cell carcinoma of the oropharnyx. About 18 months after treatment Stanford Blood bank was doing a drive at work; they said I could give blood. I double checked with my radiation oncologist and she said no, I can’t and she’d get them to update their guidelines.
I donated a bit over 10 gallons from age 18 to 56. I’d hoped to get to 15.5 – I’d commission a jeweler to make a pin in the shape of a beer keg with a blood drop on it. I suppose 5 gallon bucket (x2) is possible, but not the same.
I can do autologous donation if necessary.
zhena gogolia
Thanks for the update. Praying for Claire.
Haroldo
Quite happy that Claire is doing relatively well.
CaseyL
That is **very** good news about Claire! Happy to hear, and thanks for updating us. Will she be getting regular “suppressive” chemo treatments for the rest of the year? Or start with with radiation next?
I can’t give blood; I’ve tried. I have tiny veins that vanish whenever a needle is headed their way, even for simple blood draws (like Nicole, I may start telling phlebotomists to just go straight to the hand). The last time I tried, about 25-something years ago, the vein collapsed and I hyperventilated and the techs disconnected me and said “Don’t try this again.”
DaveInOz
Well they haven’t relaxed the blood donation rules here in Australia. I used to donate regularly in the UK but I’m still on the banned list here as I spent more than 6 months in the UK (I migrated from there) in the 1980’s and 1990’s.
MomSense
Sending continued healing and good thoughts to Claire. I really appreciate everyone who has donated blood and platelets. Because of my bleeding disorder, the people who donate could literally save my life.
David, I mentioned in the last Claire update that I will happily make some hats for the family and that goes for all the jackals and their families who are fighting cancer. Let me know. I’ll make sure whatever color and style you like.
Roger Moore
@DaveInOz:
They haven’t relaxed the US rules for people who lived in the UK. It’s still a lifetime exclusion for having lived more than 3 months in the UK between 1980 and 1996 or receiving a blood transfusion there anytime since 1980. The thing they relaxed was to eliminate restrictions on people from the rest of Europe (except France and Ireland).
mazareth
Glad to hear that Claire is doing well. I was treated for thyroid cancer in 2009, and had a recurrence in 2014. I’m not in remission, but stable since the recurrence.
I haven’t check with the Red Cross, but I don’t believe I’m able to donate blood at this time. I’m O negative, so I really wish I could donate. I was prohibited from donating for many years, because i spent about 3 years in Austria during the early 90s. I only donated 3 times prior to my initial cancer diagnosis.
AdamK
I have clean O- blood, but I’m gay, so fuck me. Homophobic “American” Cross can go fuck themselves.
sacrablue
So happy that Claire is a tough little girl and doing well. I’m one of those people banned from donating because of Mad Cow. By the time they change the rule, I’ll be to old to donate.
Mary G
Happy to hear that Claire got to go home for a while, and that her next round is preventative. I’ve been forbidden to give anything since I came down with RA aged 23.
My ex-husband was AB+ which is rare and can be universally used. He got emergency calls to donate all the time and ignored them, which was one of the things that made me not sorry to be divorced.
Nicole
@wmd: I was curious and googled and I’m wondering if your radiation oncologist said no for reasons to do with your own health, since it seems that squamous cell carcinomas do not make a person ineligible for donation.
(Obviously, follow what your doctor says over what some loon on the Internet says she saw, but if it’s important enough to you to get to that 15.5 you could get a second opinion. You never know.)
And either way, it’s awesome you’re still cancer free. May it stay that way.