My husband has been in the hospital for a week. He had been struggling to eat and drink due to nausea. His oncologist had him come in and they gave him a liter of saline and sent him home. We are rural and live an hour from the oncologist and any hospitals.
When we got home that evening, it took him 5 minutes to get enough strength to get out of the garage and to the door into the house. But he just couldn’t do the 3 steps up into the house.
In the end I called 911 and they took him by ambulance to the nearest hospital. All his blood cell levels were low and continued to drop each day he has been here. Finally his hemoglobin got to 6.7 so they transfused two units of blood. However, the day after his platelets continued to drop and his hemoglobin only went to 8.7 and the doctor has been hoping for at least 10.
There is no blood in his urine and none in his stool, so he doesn’t appear to have internal bleeding.
He did have 5 Radium 223 infusions, the last November 30 th.
We have not been able to get his oncologist’s opinion because he is not associated with the hospital the ambulance took my husband to.
However, I suspect, based on 6 days of dropping cell numbers, that his bone marrow is no longer correctly making blood cells.
If this is the case, does he have any medical options? He was trying to get into the BITE study, but I suspect this will disqualify him. His other alternative was Jevtana. Could that help? He is not in pain right now. I am worried the Jevtana will cause bone weakness and bone pain.
I understand he is near the end of his fight, but I want it to be as pain free as possible and I would prefer he can pass at home and not in a hospital.
Sorry this is so long. Gentlemen, what would your wishes be at this point? Start chemo, and possibly get more time but possibly less quality? Or do hospice and just let the blood cells drop till you slip away?
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After slowly dropping all fall, my red counts dropped off a cliff in December: in a month, RBC went from 3 to 2, Hgb went from 9.4 to 6.5, and HCT went from 27 to 20. I was not as weak as your husband, but every day was a struggle. I recently got two units of blood and have responded well.
I received Lu177 (Pluvicto) over the summer/fall, and it seems either the radiation damaged my marrow or the cancer has really infiltrated it, or both. (I have skeletal bone mets so extensive that they cannot even be seen as distinct individual mets.) My next option was likely chemo or immunotherapy, but I have opted to try BAT instead.
Doing high-dose T is of course not a standard treatment, and poses risks. (In addition, for those reasons, it is hard to find docs willing to prescribe it.) But my thoughts are, the low-T state of ADT helps promote anemia and so it seems possible that high-T might help improve anemia. How this might work in the context of bone marrow damage, I have no idea. The high-T may be of no benefit at all.
My other thought on BAT is that even if it fails to slow cancer or impact anemia, it may bring at least a short lift in QoL. The risk of trying it for that possible benefit is a subjective decision for the individual. It is a roll of the dice.
I looked through your prior posts and see more similarities to my situation. Although not nearly as sick or weak as your husband, my docs though some of my problems in Nov/Dec were cancer-related only to the extent my immune system was extremely weakened and I likely had some sort of viral infection.
I had COVID in July and it took well over a month to regain strength and recover from extreme shortness of breath and fatigue (although never severe enough to require hospitalization). My O2 levels and blood work were all fine. But I feel as though I never fully recovered from COVID, and have been wondering if it reactivated some latent virus.
In Dec, I lost my appetite (or was feeling full after only a few bites, possibly due to enlarged spleen?) and lost 15 pounds over a few weeks. I became extremely constipated, had unusual thirst and frequent headaches. My AST has been rising, and is now over 100, with no definitive cause seen by my docs, but it could be from a virus.
Almost on a whim, I asked my doc about the steroid dexamethosone. He thought that was a reasonable idea and prescribed a short (two-week) high-dose course, with a taper. It has really made a difference in appetite and energy, and pain relief, even before I got my blood transfusion. I am gaining back weight. (The big downside is that it keeps me up at night, and the lack of sleep cannot be helping with my immune function.)
If you do a bit of research on the use of dex with those in your husband's state of decline, there is some literature that supports its use in this context, even if the benefit is only brief. I would not say its use for this is common but I don't know that it is considered dangerous, either. So you might ask your doc(s) if it's worth a shot. It is certainly more mainstream than high-T and more likely to get a "yes" from most docs.
That is interesting and his doctor is talking about something to stimulate his appetite, so I had assumed it would be steroidal. His AST is going up too, I think it was 132 this morning. I suspect the combo of influenza A near Thanksgiving and then Covid 2 weeks ago just wore his body down. He has not spiked a fever for 3 days now, so I am hoping he is finally kicking the viral infection. He is negative for Covid and influenza A and B at this time. You two definitely have a lot of similarities! I am glad the steroid is helping you.
All of the chemo and radiopharmaceuticals therapies deplete the bone marrow. The BiTE clinical trials have differing requirements. For example:
Adequate organ function, defined as follows:
Hematological function:
absolute neutrophil count >= 1 x 10^9/L (without growth factor support within 7 days from screening assessment).
platelet count >= 75 x 10^9/L (without platelet transfusion within 7 days from screening assessment).
hemoglobin >= 9 g/dL (90 g/L) (without blood transfusion within 7 days from screening assessment).
Renal function:
1. estimated glomerular filtration rate based on Modification of Diet in Renal Disease calculation >= 30 ml/min/1.73 m^2.
Hepatic function:
aspartate aminotransferase (AST) and alanine aminotransferase (ALT) < 3 x upper limit of normal (ULN) (or < 5 x ULN for participants with liver involvement).
total bilirubin (TBL) < 1.5 x ULN (or < 2 x ULN for participants with liver metastases).
Cardiac function:
left ventricular ejection fraction > 50% (2-D transthoracic echocardiogram [ECHO] is the preferred method of evaluation; multi-gated acquisition scan is acceptable if ECHO is not available).
Ah, well the answer is no then. His platelets today are 41 and his blood transfusion was yesterday with hemoglobin now at a high of 9.1. And that is with out looking up any of the other criteria. ☹️
Each clinical trial has different requirements, so I don't mean to discourage you. But clinical trials like to get patients who have some probability of benefiting.
My husband’s bone marrow has been greatly compromised from all the treatments and the cancer. His platelets are so low he has uncontrollable nose bleeds. Last I knew his hemoglobin was 6. His last treatment was on Sept 8th which was Lu 177 that really knocked the sails out of him he never recovered. He is on hospice close to the end. I’m so sorry to hear your husband isn’t well.
My cousin John was in a similar situation last March, with very low RBC and platelet counts, too low for any further chemo; his doctor put him in home hospice care, but he was able to get a final transfusion that helped him feel better. I sent his bloodwork to my doctor at Care Oncology (CareOncology.com), and he thought that, even at this late stage, that the Care Oncology Protocol might help. John's extensive chemo treatments, though, had apparently done too much damage, but John was willing to try anything at that point. John passed away a few weeks later on St. Patrick's Day.
is it possible that his oncologist can access your husband’s medical record at the local hospital electronically? I have been pleasantly surprised how this has enabled review in my husband’s care
Otherwise,can you and then make copies to send him?
I am working on that. Both the hospital my husband is in and his oncologist use MyChart, so his oncologist should be able to look at the blood work done in the hospital. I have left a message with the oncologist and am waiting on a call back.
my father went through the same thing after Radium 223, I wish we had never done it. He passed in October. We never quit fighting , we never did hospice. You probably will not be able to do chemo considering his blood levels are so low. We kept getting blood transfusions and platlets , almost weekly. But while we were getting the tranfusions to get his blood up we had to stop all treatment and the cancer just took off like wild fire. My dad wasn’t in pain at the end either. Just week , praying for the best
I have just been dx with myelodysplastic syndromes---MDS- RS. It is bone marrow cancers which attack various parts of your blood. It is rare, but many of the symptoms are similar to the ADT and other medicine SEs. It takes a bone marrow biopsy to determine if it is. You may want a hemotologist. Tell your MO right away.
I am sorry to read your post. The Japanese have been prescribing PSK, Polysaccharide K, or Turkey Tail mushroom for decades for chemo patients to help preserve the patient's immune system.
Copy all between the lines. There are more studies on the screens this will take you to.
for sure get away from the place that sent him home. Simple blood test would have shown his hemoglobin level low. Really makes me mad. Sounds like a family doctor that cares can watch him and do much better than that hospital.
I've been dealing with MDS del 5q marrow cancer for almost 9 yrs now. Onco Rxed Revlimid that worked great but my liver enzymes climbed and I have cancer now. Hgb dropped into low 7s, hospital gave me 2 units blood and fwiw, 8.7 looks pretty damn good to me.
After cancer drugs and chemo failed to work, my husband had radium 223. He was supposed to get once a month for 6 months. After 2 treatments his platelets became too low and he felt terrible. He quit the radium 223 and had no other treatments. 3 months later, he had tachycardia and had to go to the hospital. He had a transfusion and several platelet transfusions but his platelets dropped to 2 and he had blood in his urine. They tried to cath him because he was having trouble emptying his bladder. He couldn't stand the pain from the cath so they had to knock him out. He never came back from being knocked out and died 3 days later. The doctor said it wasn't the radium. The cancer had infiltrated the bone marrow Wish the had done an MRI before to check his bone marrow. It was a very sad and difficult time for us.
Unfortunately, patients and/or docs often want to be as aggressive as possible for as long as possible and sometimes the treatment ends up making things worse and can lead to poor QOL and early death. Check out the book "Being Mortal" atulgawande.com/book/being-...
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