Confused about symptoms/prognosis

[pinebluff]

Dad (83) finished Vidaza in Sept. The doctor gave him a 50% chance of surviving for 6 months and told me not to hold out much hope. He is in hospice now after little improvement in the WBC (1,400) and plts (29,000). I feel so confused and alone here trying to cope with the uncertainty and questions that I have. Particularly, when the doctors are so vague and unhelpful! When I asked him what a person who has MDS dies 'from', he said 'weakness'. (Huh?) For example, several months ago dad was falling on a daily basis; he was so weak that he could barely walk. He also lost a lot of weight, had no appetite and nausea. But, for the past month he has slowly begun to improve and gain strength to the point of walking short distances unassisted and getting an appetite again. This is wonderful! It also brings another dilemma: stay here as dad's sole caregiver away from my husband and family, which I've done for the past 6 months, or consider relocating him to our home? I'm not expecting anyone to give me that answer, but I would be so interested to hear from those of you who have had similar experiences to mine. I want to be completely realistic - expect the best and prepare for the worst. Sometimes I wonder if this is something like the final bloom.... so sad! The only health problems he's having at the moment is a recurrent staph infection that pops up as abscesses that are very resistant to antibiotics.

[Darice]

I had just followed this link in another post when I read your story. Please read the story from Dianne W., USA . . . I thought of it immediately when I read about your father.

http://www.mdslifebeyondlimits.org/s...eir-own-words/

Yeah, your Dad is 83 while Dianne was 45 at diagnosis . . . but the story shows that nothing is impossible in this not-always-well-understood disease. Would your father be happy at your home? Would it give him something more to live for or more pleasure in whatever life he has left? It would certainly be easier and more pleasant for you to be home with your family . . . and that would probably make it easier for him, too. An acquaintance has been staying across the country with her mother with what started as a six-month life expectancy . . . she has been there almost three years now and it is very tough on all concerned.

My husband, 70, started getting his diagnosis in May, also, and I am terrified of the survival statistics . . . so I quit looking at them. No expiration dates here, and Jens is more than capable of defying the statistics. He also went through the falling almost daily, but is much better now. Thursday, we went up to my sister's for Thanksgiving and we are all thankful that he so enjoyed the day . . . and his favorite turkey leg . . . and we fully expect to be back there next year.

Hang in there.

[pinebluff]

Thank you for this, Darice. That was my first post and I was so hoping to find a reply this morning. I just read some stories on that link. Very inspiring. Dad made it to church and a restaurant for lunch for the first time in over 6 months! Of course, he's sleeping now... but what an improvement. I also wonder if there is not a bias on the part of his doctors due to his age?

I was all the best for you and your husband. You seem to have a wonderful outlook.

Blessings for the kindness of strangers!

[Darice]

Jens tried the Vidaza in June, but only had the first three shots . . . completely wiped him out and he was in the hospital then skilled nursing/rehab for just over a month. His is secondary or treatment-related MDS, and I know that can be more aggressive and harder to treat. Sounds like your father tolerated the Vidaza better . . . and it may yet kick in and give him some improvement in the counts. Right now, my hubby is doing OK with only a Neulasta injection every two weeks . . . the doctor doesn't know why that is working so well for him, but we sure aren't going to rock the boat. The counts are slowly drifting back down, but he's holding his own. He probably spends about two thirds of his time in bed . . . some days more . . . and much of the "up" time is in front of the TV because he doesn't have much energy. We've learned to take advantage of the good days, and thank goodness Thanksgiving was one of those. And he went right to bed as soon as we got home from that. So glad your father was up to church and lunch today. How far are you from your home? I know it's tough to be away so long.

[pinebluff]

We have a home in Florida, but until this diagnosis in June we both worked overseas. My husband is still in Africa. I am an only child, so there's not much support from an extended family here.

Unfortunately, the doctor told dad he had a 50% chance of surviving past x-mas, so he has taken that at face value. I don't think that will be the case at all. After joining this forum, I'm starting to think that I should talk to his oncologist this week and get specifics about his blood work/biopsy. Looking at the last CBC on 9/27 it appears that only the WBC and platelets are affected.

Any suggestions about intelligent questions to ask would be appreciated. I notice that you have loads of scientific-looking data - and you sound so well informed!

It's wonderful to hear that your husband continues to tolerate this Neulasta (?) well. Does he suffer from depression? Sometimes I wonder about suggesting Zoloft or something to his hospice nurses. They seem so keen on drugs and pain meds - which I think are most unecessary for MDS at dad's stage.

[Darice]

HooBoy, you are a long way from home. And no good support system/family . . . for you or your father. That's tough. Do you know/like/feel comfortable with his doctors? Do they know what they are doing with MDS? I guess I'm a little uncomfortable with his doctors . . . there are a few things that worry me here.

You mentioned age bias and I believe this can be a real problem sometimes . . . his being 83 is NOT a good reason to just sit back and accept death. I have a cousin who is 93 and has just been diagnosed with breast cancer. She has had surgery followed by radiation and they are now discussing hormonal therapy. She has good doctors who are not giving up on her just because of her age. And she is doing good and has quality of life. I have discussed her with our oncologist and he agrees with her treatment.

Related concern is that the doctor(s) seems to have assigned the six-month time table and stopped treatment . . . true? Is your father receiving any treatment currently? How often does he see his oncologist? Hematologist? What medical professionals are involved in his care . . . you really need someone who KNOWS how to deal with MDS. I don't like hearing that the last CBC was in September . . . we are currently going every two weeks for CBCs . . . and it would be more often if something were to start going on . . . numbers dropping more dramatically or something. I don't want a doctor who just gives up.

You mentioned that your father "finished Vidaza in Sept" . . . why is it "finished"? The usual with Vidaza seems to be to continue until it no longer works well . . . but that it can take up to six months to take effect. That is, a patient can continue Vidaza with dropping blood counts (and transfusion dependancy) and no apparent response for six months and then see a result. There may have been some other reason for quitting the Vidaza, but I would question whether it got a fair chance. And there are other treatments that can be considered.

I assume/hope that there was a bone marrow biopsy (BMB) involved in his diagnosis . . . you did mention a biopsy . . . do you have the results of that? If not, get them. And get his doctor to explain them to you. You should know the IPSS and sub-type. You need to know what his CBCs are NOW, not what they were two months ago. You say it seems to be just the WBC and platelets affected, but let's confirm that with a new CBC. The Neulasta injection my hubby is getting is a growth factor . . . it stimulates production of the white blood cells (and with your father fighting staph infections he needs all of those he can get), but seems to also be stimulating red and platelets. And it doesn't come with a lot of side effects. I'd say it's worth a try for your father, but I'm not a doctor. But I would sure ask about it.

I'm probably just overwhelming you with questions, but I really think that you need to look hard at the doctors . . . make them accountable or change them out for new ones. I think it's worth fighting. Let me know what you find out or if you have more questions for me.

Hope your week goes well.

[Chirley]

Hi, I want to tell you the story of my Dad. It's not about MDS but gives you an idea how some doctors think.

My 84 yo Dad who lives independently, does all his own housework and cooking, mows his own lawn and rides his pushbike 3-5 kilometers a day suddenly started complaining about nerve pains in his right leg with weakness causing incapacity. After waiting several weeks to see if it would improve he went to see his GP, who told him that he was just a "rusty" old man and it wasn't worth doing any tests. He ordered morphine tablets and sent him home.

I became irate...... I insisted Dad went back and demanded a CT scan. He did and the GP reluctantly ordered the scan. End result....spinal canal stenosis. I told my Dad to ask for a referral to a surgeon, the GP said that there was no point because Dad was too old. I rang around and found a well respected neurosurgeon and made an appointment for Dad and then rang my Dads GP and told him he WOULD write out a referral.

Dad went to see the neurosurgeon and all he requires is a relatively simple decompression procedure which will require 1-2 nights in hospital. If left Dad would have lost bowel and bladder control and become wheelchair bound and in intractable pain.

In short my experience is that doctors can be very age discriminatory and even more worrying is that older people trust everything their doctor tells them.

Don't worry if you upset his doctors there are many more around.


Regarjds

[Darice]

Good for you for pushing that, Chirley. I have seen a lot of age bias, too, and it's sad. Like you say, the older patients tend to think of the doctor as a kind of god who shouldn't be questioned . . . I know my parents are/were that way. I have advocated for them a lot . . . and gotten them to doctors without that bias where I could.

I have a good "dad" story, too. My father just turned 89 and is in independent living . . . and there's another story; I had to "trick" him into it. Anyway, he's pretty self reliant and active . . . and stubborn. He has macular in one eye and a shingles infection in the other and his vision just isn't up to driving . . . never mind his strength, reaction time, and deafness. I had been trying to get him to give up his keys for a while (he wasn't driving, I took him everywhere he had to go, but he wasn't ready to give it up, either) but he was certain that he could drive short distances, during the day, in emergencies. I really wanted him to make the decision for himself because then he would stick to it . . . and I was keeping his car out of his reach. Anyway, I went with him to a doctor's appointment and the doctor was asking him about exercise. My dad was telling him what he did and asked: "I guess I don't know . . . what is normal for my age?" The doctor looked him in the eye and said: "Reed, for your age normal is dead." And this was not age bias, he was just making a point. Dad and I looked at each other and then we all just burst out laughing. It was enough for Dad to realize that his life really is pretty good . . . he is living in a place with lots of activities and a car and driver available if he needs it plus a mini-bus that makes regular shopping and doctor office rounds. A few minutes later, Dad asked the doctor if he wanted to buy a car (and he actually did come out and look at it) and he never looked back again. That was it. He made the decision himself and is happy with it.

That doctor is also a friend and we like him . . . but there are so many others I could just shoot. So many try to talk to me rather than to my father. I usually go along on doctor's appointments to help remember questions to ask and to take notes and the like . . . but Dad is in full charge of his health care and it really irritates us both when a doctor directs questions and conversation to me rather than Dad. I think we have gotten rid of all of those doctors.

Boy, health care can be so difficult, can't it?

[pinebluff]

Wow - talk about feeling enlightened!

No - I do not like any of the doctors here, but I walk a fine line because dad refuses to change or get a 2nd opinion. He said a 'lab result is a lab result'. A very stubborn man who doesn't want his daughter, of all people, telling him what he should do. This has been the greatest challenge - aside from his actual illness.

The oncologist/hematologist told him he wasn't seeing much improvement after the 2nd round of Vidaza in July. Dad was losing weight and feeling very fatigued during this time. So, after the 3rd round of Vidaza he told dad the blood levels weren't improving enough to justify the treatment. And that was that; he released him into hospice. So, he is receiving only palliative care and getting no further treatment or blood work. Although, after reading the posts on this forum, I decided it was time to take some initiative. I took dad in for a CBC this morning and left a message for the oncologist to call me. I will get him to explain the biopsy/smear and blood work to me.

I will post the details of the biopsy and new CBC as soon as I get them. Also, I want to ask about the drug your husband is receiving. It sounds very promising! Thank you again for your stories. They give me hope and encouragement for the future.

[Darice]

Yep . . . fine line walking . . . fathers and doctors and daughters trying to help deal with medical issues . . . yikes! It's real tricky to switch that role around to the point where you can advise and help him on medical things . . . and you may have to trick him somehow for his own good.

My understanding of Vidaza is that it may take six full cycles before it starts to take effect and show an improvement in the blood counts. Your father's doctor gave up way too quickly. But there are other options, too. Fatigue is common with any cancer and any cancer treatment . . . again, not a reason to give up. If your father is going to church and out to lunch I just don't think he's ready to roll over and die. Ask him if he's up for a good fight and give him something to live for.

I'm sure that the Neulasta isn't a usual first-line defense for the tMDS . . . but it's working for us. Neupogen and the newer Neulasta have been around for a while . . . and used with MANY cancer patients (not just blood cancers) undergoing chemo. Low blood counts is a common side effect of chemo, and Neulasta (or Neupogen) is used to help boost white blood cell production. There is another drug to help boost red blood cell production, but we've never tried it. Somehow the Neulasta is working to boost red, white, and platelets for my husband . . . and it's keeping him at OK counts with no side effects and no transfusions. Might not work as well for your father, but what have you got to lose in trying?

I don't think you have mentioned whether your father has had transfusions? If you read on the forum here, you will find MDS patients who have had hundreds of transfusions to keep the MDS at bay. Not without its own set of problems, of course, but just another way of coping with the MDS.

I'm sure there is a hospice doctor on your father's hospice team. He's not going to be an expert in MDS, but he might be someone you could easily talk to about it . . . and you could enlist his/her help in explaining some of this to your father and encouraging him to seek a second opinion or to get more aggressive with his own doctor and demand further treatment if he is still unwilling to change doctors. Might come better from a doctor than a daughter. Sigh.

I'll be real eager to hear the CBC results . . . and the BMB results. Our BMB results went on for five pages and it's pretty intimidating at first, but get in there and ask questions. Currently Jens' platelets are over 100,000 (miracle of miracles), but he has spent a LOT of time around 9,000. Your father's 29,000 is low, but lots of people here are probably working with fewer platelets and doing OK. His WBC is also low, and that makes him very susceptible to infection . . . like staph. There are lots of sites explaining blood counts where you can read up on the different results. Do call and ask for the CBC results . . . we always get ours in about 15 minutes . . . while we're sitting in the office . . . so they should have results pretty quickly.

[pinebluff]

Well, yes, I confess to frequent trickery in the name of - "the means justifies the end". I could tell you some stories!

According to his hematologist, Dad never needed transfusions because he wasn't anemic. Going purely on the CBCs - it seems to me the only thing he could die from would be a serious infection, or internal bleeding. Would that be right? The doctor never gave much detail, nor did he present Vidaza with much hope. I can't wait to see how he responds when I press him for details on the tests. I'll probably have to act like the 'dumb woman' so I don't rile up his ego. So tiresome....! I just can't help but wonder if this dramatic improvement over the past month isn't due to the effects of those 3 Vidaza treatments 3 months done the line. Guess there's no way to know for sure.

As far as hospice, they don't understand my motive for the blood work. I guess they are purely palliative care and have no incentive to lose a patient back into active treatment. (Is that cynical?)

I take your point about asking dad if he's up for a fight. And I think he is. Then comes working out the living and care-giving arrangements. Not easy - especially because he has 2 dogs that he cannot live without. That rules out assisted-living. Shame - because in some ways I think he would benefit from having more social contact than he does.

I'll try the doctor again tomorrow for the test results. Very curious. It's amazing the range in platelet count that your husband is experiencing. I'll say a little prayer for his continued progress.

Many thanks, again...

[Darice]

You say that the hematologist didn't do transfusions because your father wasn't anemic . . . well, you can get a transfusion of platelets only, and that might be something worth considering. Depends on where his platelets are now. There are good reasons to not do transfusions lightly and your own circumstances and doctor will determine that. Also, one person may function well at a level that would be impossible for another. No real hard and fast rules there . . . you need platelets to clot blood in case of a surgery or other event. The WBC is a different story, and I'm really thinking your father needs some help (and that would be the Neupogen or Neulasta injections) to boost his white blood count to help fight off the staph infection. There's not the down side with these injections that there can be with transfusions, and it seems that most doctors don't hesitate to try them. Sure wouldn't surprise me if his improvement is attributable to the Vidaza . . . that does seem to be its pattern.

I don't know what to tell you about hospice. I've seen good and bad there . . . and there are lots of different organizations running hospices . . . all different, I'm sure. We went through it with my mother last year. Good and bad. I know the basics are that you have to agree to not seek aggressive treatment for your condition. But you can go in and out of hospice. If your father were to go back on Vidaza, that would probably mean leaving hospice. But I would think that Neulasta or transfusions would be seen as more palliative and would not require his leaving hospice. I would think that the true spirit of hospice would welcome one of their patients recovering enough to leave hospice . . . but then money is lost . . . and there's our cynicism again.

Don't be too quick to rule out assisted living because of the dogs. Depends at least in part on finances. My father is in a delightful retirement community . . . and we are so thankful that he has the financial wherewithal to afford it. He is in independent living now, but started in assisted living at the same property. Residents do have dogs. And when they aren't up to walking the dog themselves, there are employees around who are willing to help out . . . for a price, I'm sure, but still. Worth checking out.

Do you want my personal email or phone number? There's a way of connecting privately here; I just haven't had occasion to try it. But I'd sure be more than willing to talk to you more personally.

[pinebluff]

I got the CBC results today: WBC=2,400 - Platelets=24,000 - HGb = 9.5. Very close to the levels he was diagnosed with on 5/11.

Still no luck speaking to the Dr. regarding the pathology report. I'm trying to decipher it myself!

DIAGNOSIS: Pancytopenia with myelodysplastic features, subclass. uncertain, see comments.

The WBC is 2400 with residual lymphocytes consisting mainly of small lymphocytes. No blasts or nucleated RBC are detected. The hemoglobin is 10.1 grams percent with mildly macrocytic indices. Platelet count is 25,000 with no qualitative abnormalities.

Hypercellular aspirate smears reveal absent iron with no abnormal distribution detected. An adequate biopsy shows irregular hypercellularity averaging 60-70% with normal bone trabecular and marrow vasculature.

Megakaryocytes are increased, consisting mainly of immature and abnormal forms including micromegakaryctes. The myeloid/erythroid ratio is greater than 8 to 1 with a predominance of myeloid cells within limited maturation, although maturation proceeds. Mildly megaloid erythropoietic features are present. Accompanying flow cytometry reveals about 3% blasts are present.

The changes appear likely due to a myelodysplastic process, best classified as refractory cytopenia with multilineage dysplasia.

This is like a foreign language to me. All I've understood so far is that they think he has RCMD.... I read that this can often lead to AML. Perhaps that's why the doctor gave a 50% chance of surviving for 6 months?

(Darice - I think the private messaging is a great idea. My posts must be getting tedious for the general public! Will go look for that option now.)

[mausmish]

Trust me, your posts are never tedious! There are lots more people with the same kinds of questions, and sharing information and different experiences is helpful for us all.

[Darice]

Good point, mausmich.

pinebluff:

One of the things you need to look at is your father's IPSS score. This is a scoring system developed to indicate disease severity. Your doctor should have indicated what he determined the IPSS to be, but there are tables to determine it yourself. It takes into account three factors: number of blasts (immature cells), chromosomal damage, and cytopenias (indicating red, white, and/or platelet involvement). As I see it, your father gets a 0 in category 1 for less than 5% blasts, a 0 in category 2 for no chromosomal damage, and a 0.5 in category 3 for trilineage or pancytopenia. That gives him a score of 0.5 which puts him in the low risk category.

That's not the whole story, of course. His age and any other health problems he may have can increase his risk factor and complicate his treatment. But there are still lots of treatment options. I don't think that the Vidaza was given a fair shot, but I think he probably was helped by it. There are other drug and chemo therapies. He would not be a candidate for a stem cell transplant, but transfusions and growth factors would bring his counts up which would have him feeling better . . . and help to fight the darned staph infection.

One interesting thing to me about the report is that they do just kind of tiptoe around actually diagnosing MDS. They say "pancytopenia with myelodysplastic features" and refer to a "myelodysplastic process" . . . that also indicates to me that your father's position isn't quite as dire as your doctor seems to indicate.

I just think it's criminal that the doctor hasn't given him Neupogen or Neulasta to help fight the infection. And it could, as in my husband's case, help boost his other blood counts.

[Lbrown]

Wow - they gave him 6 months based on that report? It doesn't seem that dire.

Good luck!

Deb

[pinebluff]

I certainly appreciate all this feedback. At least I know I'm imagining the whole thing! Since joining the forum I have gone on a crash course on MDS - lots of reading and investigating lately. When I speak to the doctor I'll know to ask about the IPSS, the vague diagnosis, and treatment - or lack of it.
Let's see..... he comes back into town next week.

In the meantime, dad is getting a sore throat and a cough. These kinds of things scare me now.....

[Greg H]

Hey Pinebluff!

Like Karen, I hope you'll keep your conversation in the public forum. I've been reading it religiously, but Darice is doing such a good job offering advice and support that I haven't jumped in. It's a very, very interesting case, and, based on what I've read, if I were in your shoes, I'd be ready to tie my Dad's hematologist to a rail and drag him out of town.

As others have said, based on what you have given us so far, this looks like a lower-risk MDS. Even the dysplasia (messed up baby blood cells) noted in the biopsy report isn't all that dramatic. I agree with Darice's scoring of the IPSS, unless you can find a section of the biopsy called "cytogenetics" or "karyotype" and share whatever's in there.

It does seem like the Vidaza was pulled too quickly, but, given the low blast count and the lower-risk profile, I'm not sure why he was on Vidaza in the first place.

You really need a second opinion from an MDS specialist, though I understand why that's hard to get done.

It's mostly infections that kill people with MDS, along with internal bleeding from low platelets. It would be good to get your Dad's WBC count up with the Neupogen or Neulasta.

Good luck to you both!

Greg

[Joan]

Hi Pinebluff;

I am interested that Aranesp has not been mentioned for low Hgb. Don gets 300 mg every two weeks and that keeps his Hgb around 10. He is able to function reasonably well at that level. He just turned 80 earlier this fall and was diagnosis with MDS in 2006. Fortunately he hasn't needed any transfusions since summer of 2007. His MDS was secondary to chemo he received for non-Hodgkins lymphnoma almost 13 years earlier.

Good luck.

[pinebluff]

Thanks for pitching in Greg and Joan. Yes, Darice has been very helpful with lots of good information and food for thought. I am so grateful to have gotten good advice from you all. I am waiting to speak to the hematologist next week when he returns, and I plan on asking him about transfusions and Neulasta. We've got a good lead on another doctor for a second opinion, in spite of the fact that my father says he's not interested.

Maybe he'll change his mind after the week-end. He's totally bottomed out again with the extreme fatigue and has spent the last few days in bed. He fell on Friday. I spoke to his GP he told me that dad has a weak heart due to an irregular heartbeat. Got that working against him, too. He did manage to make it to the diner today, but a couple of guys had to carry him out to the car because he couldn't even manage to hold up his head!! It's so sad. He's lost so much weight and has a no appetite. On days like this, I wonder how he carries on.

Need to stay positive, I know this. Some days it's easier than others....

[pinebluff]

Joan -Does the Aransep make a real difference in his energy level and fatigue?

[Joan]

It is hard for me to judge his energy level and fatigue. He still walks a mile a day but it takes him about 40 to 45 minutes. Last year he was able to go further faster. He has learned to live with less energy. He sleeps 10 to 11 hours a night and usually naps for at least an hour during the day. The first two years after his diagnosis were the roughest. He just had to learn that he had to do things slower and less of them. He is losing strength but I don't think that is all the fault of MDS. Hopes this helps a little.

[Darice]

Joan
I'm so interested to see your story and that your husband was diagnosed with secondary MDS in 2006 and is still walking a mile a day. My hubby was diagnosed, secondary, this past March/May and all I've been hearing is all the doom and gloom about secondary MDS. He, also, had NHL . . . starting in 2001 with recurrances and chemos and radiation and surgeries etc., etc., until his stem cell transplant (auto) in 2008. I know that both the chemos for the NHL and the stem cell transplant contributed to the MDS, but your story is sure encouraging. Jens is younger than your husband, but has a number of other issues, and chromosome damage with the MDS. Did your husband ever have the Vidaza (or other chemo/treatment), or has it been just the Aranesp? Is it just his red cells affected or are the WBCs and/or platelets also affected? Jens also sleeps 10-12 hours/night (sometimes more) and usually naps a couple of hours during the day. I'm interested in hearing more of your story.

[triumphe64]

Darice,
Does the altitude at Colorado Springs have any negative effect?

[Darice]

Triumphe64
I really don't think the altitude has much impact . . . probably some, everything seems to have some impact. But it seems to me that a person gets used to whatever altitude s/he is at. The impact is when you go to a different altitude. A person coming here from the lowlands would definitely feel the difference . . . and be wiped out by it . . . but would gradually get used to the higher altitude and get back to normal. Many athletes train here and feel they have an added edge going from the altitude to a lower elevation. A hundred years ago lots of tuberculosis patients came here because it was believed that the altitude was beneficial to their lungs. Just my thoughts . . . I'll ask my doctor next time we're in if he thinks there is an impact.