Postponed chemotherapy

Hi Liz888,

I understand your concern about the sluggishness and lack of competence of the hospital.

However, postponing chemo for some short time should not be too bad in your dad's case.

I had highly malignant large B cell lymphoma in my cerebellum in 2012. After a few chemo sessions my thrombocytes were low, and the next chemo was postponed for some weeks. Another time when my stem cells were to be collected prior to a high dose chemo followed by an autologous stem cell transplant, my white blood cells were low, and there was a postponement of about one month.

But the treatments took place a little belated, and they went well. I am now NED (no evidence of disease) since 2 1/2 years and feeling pretty good.

Good luck!

Sten

Liz888 said:

Thanks!

Hey, Sten!

 

Thank you so much for your reply. It does help quite a bit to hear stories like yours. Congratulations on your on-going NSD state. Have a wonderful day!

Liz,

Between huge nodes first being seen on a CT all over my body (from the neck to the pelvic area, and from one underarm to the other) and my first infusion, the wait was over two months.  When I finally met the hematologist I was going to use, he said at the end that my first infusion would be "in two weeks."  I asked if that was problematic, but because I had an indolent form of the disease, he said it would be wholly irrelevant.  (He is Ivy-trained, and has five Board Certifications.)  He added, "If your case warranted it, I would put you in the hospital today and begin treatment in the morning."

Others have more aggressive strains of lymphoma (there are 40 commonly recognized forms of lymphoma, and each differs somewhat), or have issues such as the breathing problems, which make a faster response necessary.  In fact, I first had a CT because of severe heart pain, which ended up being nodes pressing agains the heart, but the pain only occured once and did not return, so it was not an issue in my case.  Initially the ER diagnosed me as having "unstable angina."  For a strain of lymphoma to morph into another within a few months is odd and rare. I suspect that the initial pathology report was simply wrong.  Otherwise, most patients do not receive additional biopsies while in treatment, so that was perhaps not too egrigious a miss on his doctor's part.  Certainly any board certified oncologist knows when additional pathology work is recommended.

Lab turnaround varies with the lab.  Generally, a large teaching hospital with in-house facilities will tell you something within one working day, if information that rapid is justified, as in your case at Mayo.  Remote community centers shipping out their lab work can take a lot longer.  Most results at most places today are sent via e-mail, which helps.  I am in the habit of calling the doctor's office and requesting results over the phone as soon as the doctor has had a chance to review them himself.  Virtually all doctors agree to this.  My medical center now even emails results directly to patients in some cases.

So, the issue of time varies a lot with the nature of the disease, the facilities being used, the health of the patient, ect.  It sounds like his care thus far has involved bad luck more than incompetence.

A friend has advanced, Stage 4, "triple negative" breast cancer (i.e., "as bad as it gets"; prognosis for remission under 20%).  Her initial chemo was delayed a couple of times as she got second opinions, etc. I have known a lot of people on chemo who had delays for a variety of reasons, some as simple as a holiday.  She recently travelled to MD Anderson while in mid-treatment for some socondary advice, relateing to surgery she was about to have. Ergo, delays are almost the norm rather than the exception. And the more complex the case, the more delays.  Very simple cases proceed with less course correction.

I wish your dad a full recovery. Most lymphoma patients achieve as much,

max

Liz888 said:

Thanks!

Dear Max,

"Lab turnaround varies with the lab.  Generally, a large teaching hospital with in-house facilities will tell you something within one working day, if information that rapid is justified, as in your case at Mayo.  Remote community centers shipping out their lab work can take a lot longer. "

I think you hit the nail on the head here. When my dad first went to Mayo last October-- after the hospital in Boise could not diagnose after 6 weeks and a series of tests that each took 6 days to return with results-- Mayo had his lymphoma diagnosed within four days. Mayo has more than one in-house lab and, when a Mayo doctor sends in a sample for analysis, the simple fact is that stuff gets *done.* Mayo has access to those kind of resources. The same was true when they found cancer the second time. The lab in Boise simply could not identify what sort of cancer it was. It wasn't until they sent the sample to Mayo that it got diagnosed, although that took over a week. I'm learning that in-house labs get results much much faster than mail-in labs do, even if that mail-in lab is at the Mayo Clinic.

And, in somewhere between 1 and 10% of cases (I've read different statistics), SMZL does transform into aggressive Diffuse B Cell Lymphoma.  My boyfriend's boss -- a Mayo hematologist -- told me point blank that this kind of transformation is not uncommon. What he may have meant is that, in his experience as a Mayo doctor, this sort of transformation is not uncommon. Mayo sees all the specialized, complicated cases, though. So, that stands to reason if that's what he meant. That said, both he, my dad's Mayo hematologist/oncologist, and the oncologists in Idaho are all very optimistic about their ability to throw this into remission. It's just an emotional response -- there's something killing my dad and it feels like his doctors are sitting in the outfield making daisy chains. Makes me want to pull my hair out then throw my dad into my suitcase and take him back to Minnesota with me.


Thanks for your post, though. I need to hear they're not killing him by taking so long.  Day 5 draws to a close tonight and there are still no results. Results look likely tomorrow, though.

 

You are obviously very well informed and will continue to be a guidepost for your dad. 

Good luck with the results, and I hope they arrive today.  But nearly all strains of lymphoma have good prognosis.  My own indolent strain of HL has a 10-15% relapse rate, which is considered very high, but I view it as a 90% chance that it will not relapse.   Many lymphomas, when they do relapse, often come back as a more virulent (aggressive) form, so that too is common.  And lymphoma morphing into its sister disease, leukemia, happens too.

Luckily, most patients never see relapse or leukemia.

max