Introducing Myself

[AEBS37]

Hi all,
Where do I start? I'm a full-time carer to my now 66 yr old husband due to him having been diagnosed with GBM 4 after debulking surgery March of this year. Treatment was stopped only after day 2 of 1st cycle due to huge allergic reaction to Temozolomide and lots of other side effects. He lost 2 stone in a very short time and was in bed 24/7. No other treatment available. He has had one MRI scan which showed no regrowth, another scheduled for 5th December.

Middle of September, his Hb went down to 70, oncology rang to offer him a blood transfusion to which he refused. He was concerned about catching aids or hepatitis etc. Two weeks later, he went down really quickly - white as a sheet, jaundice, breathless, fatigued. He could hardly walk. Blood test showed his Hb down to 38. Specialist nurse insisted we take him straight to hospital, which we did. Dr stressed the need for him to have blood as Hb dangerously low, told him his organs would start to close down due to lack of oxygen. He finally agreed. Then the next few weeks consisted of blood tests, then transfusions, three separate stays in hospital due to infections and low blood count. We wanted answers, so he was referred to Haematology. His appointment was 16th November and that was when we were told that he had myelodysplasia. A bone marrow biopsy test was offered, but she said it wouldn't change the outcome, which was to manage the condition and support him (seeing as his time will be short when the brain tumour regrows - harsh, but true.) We weren't really told what it was, but by what she wasn't saying, I knew it was another cancer. I'd already been scouring the internet to try and find out what was causing him to be so anaemic. The closest I'd come up with was aplastic anaemia, which seemed to fit his symptoms. I read that in America EPO injections are standard treatment in conjunction with blood transfusions. So, I asked if he could have these injections too. Surely it would be good to encourage the bone marrow to make more of its own red blood cells than to just keep pumping him with blood. Dr said they could do that but hasn't been mentioned since. Last few weeks it's been blood tests and blood transfusions every couple of weeks. They said that they don't want his Hb going lower than 70 again. He has his follow up appointment in haematology this Tuesday 6th December. I will ask again about ethropoietin injections. What else should I be asking?

Thanks

[chris]

Hello there.

Goodness me! Your husband and you have had so much to deal with in the last 9 months. I was so sorry to hear about his serious Glioblastoma diagnosis and the difficult chemotherapy treatment which could not be completed due to severe side effects. I hope the lack of regrowth is a hopeful sign for now?

I'm glad your husband did finally agree to having a blood transfusion as a haemoglobin count of 38 is indeed very dangerous. I hope that the doctors and nurses were able to reassure him that donated blood is now thoroughly screened for those diseases. Many MDS (Myelodysplastic Syndromes) patients depend heavily on regular blood transfusions to maintain a tolerable quality of life and feel very reassured about the safety aspect. Without a bone marrow biopsy, haematologists may not be able to make a firm diagnosis of what is happening in your husband's bone marrow to cause the severe anaemia but, even without a name to the diagnosis, the treatment is likely to be the same. Are any of his other blood counts low too? Platelets or white cell count?

I understand what the haematologist meant. Perhaps she didn't want to put your husband through yet another (possibly uncomfortable) procedure when the treatment will be the same? In other words, they simply want to keep him comfortable and not fatigued so will monitor his Hb and give transfusions as and when necessary. It will be worth discussing the EPO option again at your husband's next appointment but bear in mind that this treatment may also have side effects and does not work for everybody. The haematologist will be best placed to advise you on this. Here is a link to information on EPO treatment.

https://mdspatientsupport.org.uk/epo-er ... nt-of-mds/

It might be interesting to ask whether the haematologist thinks the anemia may have been caused by the Temozolomide; this is listed as a side effect? Even if he only had 2 days' treatment months before the anaemia got so low as to cause the symptoms he had? And, if so, is it at all likely to be reversible and improve on its own?

This is really hard for me to raise but, thinking about your husband's poor GBM prognosis, have you considered asking for a referral to the palliative care team at your hospital? With no other curative treatments on offer, it is so important that you, your husband and family get to spend quality time together with him in the best possible comfort. Early referral to this team , or Macmillan, or Marie Curie can enable this to happen.

I do wish you well at this difficult time.

Best wishes

Chris

[AEBS37]

Hi Chris,

We received notes from husband's first appointment from haematology since posting on here. This is what some of it said:
Drop in Hb and plts since August 2022; FBC normal prior to this.
Has required several emergency admissions to oncology for transfusions in last 6 weeks (nadir Hb 42), but to date declined further investigations.
Examination: no evidence of hepatosplenomegaly or ln enlargement (I think this mean no problem with his spleen)
Summary of relevant investigations & results:
Hb71, WCC 2.3, Neutrophils 1.5, platelets 46 (at 16th November).
Film: L shifted myeloid series. No red cell fragments. No immature cells seen.
B12 and folate normal.
bili normal (although slightly raised in September)
Retics 25.
Summary: He has significant and rapid bicytopaenia (Hb and platelets) which has developed since September. Blood tests to date suggest the issue is with underproduction of blood, but no clear cause has identified to date. We discussed the differential, including myelodysplasia, after his radio/chemotherapy; although the short time between treatment, and developing the cytopaenia is slightly unusual. If his erythropoietin levels are low (checked today), we could use Epo to try and reduce his transfusion requirement.

As we both have caught colds, our Tuesday appointment was held over the phone. Dr said that husband's ethropoietin levels were fine so injections would be pointless. She said it looks like the bone marrow is trying to produce enough of it's own red blood cells. But without the biopsy, they can't work out why that is not happening. She said that if hubby changes his mind about a biopsy, they would be very liberal with the local anaesthetic!

So, the plan is that he will have FBC and cross matching test one day, next day 2 units of blood (or what is required), fortnightly. We are hoping our local GP can do the tests so that we don't have to travel into the city of Bristol twice a week. He's with the BRI.

St Peter's Hospice are already involved. A nurse rings us every couple of weeks. She is lovely. My husband has already stated that he wants to stay at home. So, in the future we will have to change our dining room back into a bedroom and get relevant equipment. We already have a downstairs wet room, which we built for my mother whom I looked after for eight years as she had dementia and incontinence. The MRI was done Monday, but we won't know the results until 21st December. We think it may have already started growing back. He has started bumping into things on his left side, gets very confused, forgetful and his left vision is affected. Since having the cold he has lost mobility in his legs. Diagnosed right parietal lobe Glioblastoma which is why his left side is affected most.

Take care,

Angela

[chris]

Dear Angela

Thanks for your detailed update. As your consultant has said, without the bone marrow biopsy they cannot tell what is causing the low blood counts. I suppose it might be helpful to know the diagnosis as there could be a possibility of treatment other than blood transfusions but I would totally understand if your husband cannot face another procedure at this time. It’s fair to say that some people do not have any problems at all with having a bone marrow biopsy (look at other recent posts on this Forum!).

You have such a lot on your shoulders at the moment so I hope you have got some support for yourself too? Having cared for your Mum all those years, it must be so upsetting to be revisiting the room changes again for your husband’s care.

I hope you can manage to get the blood tests done via the GP as you certainly don’t need the extra travel at the moment! My experience is that sometimes the communication of blood test results between GP and hospital can be a bit hit-and-miss (understatement!) so you might have to micromanage that yourself. Worst case scenario is that you turn up for the transfusion and nobody has the results, so you might need to talk this through with the GP and also check with the hospital in advance if they have the results. Belt and braces, get a printout of the results and take with you!! All this should be more straightforward but my personal experience is that I still have to arrange my own blood test, screenshot the results from my online GP record (very handy!) and email results to my Prof, the clinical nurse specialist and the admin team!! It may be more efficient in your area though!

Hopefully the regular testing and transfusion process that has been set up will make your husband feel less fatigued. He certainly doesn’t need the extra dizziness and breathlessness associated with low Hb counts to add to the effects of the glioblastoma.

It’s good that you’re already in touch with the hospice and that they are already being so helpful and supportive.

You’re sounding tremendously resilient and clearly taking on a lot of responsibility on your husband’s behalf. Are you also in touch with glioblastoma support group? And sharing how you feel with family and friends? People are very kind and willing to help in my experience.

Thinking of you. Take care

Chris

[AEBS37]

Hi Chris,

The MRI scan from 5th December showed no significant tumour growth. They said it was stable which is brilliant news. Hubby has continued to have fortnightly transfusions. However, end of February he was rushed to hospital with suspected chest infection which turned out to be pneumonia. He was in hospital 8 days. He had blood test regularly and on day six they gave him 2 units of blood. Because that was now out of sync with the scheduled transfusions, I asked if they could move the date of next one back a bit. His Hb level was a quite good 85, so it was decided to go three weeks till next transfusion. All was fine. Hb not too low, but was given usual 2 units. He had his blood test today and Hb level 104! Yes, 104! We still have to go for transfusion tomorrow. It seems to me that his bone marrow is regenerating itself. Is that possible? We were told that once the damage was done, it could not be undone. What are your or anybody else's thoughts please?

Kind regards,

Angela

[chris]

Hi Angela. It’s so lovely to hear that your husband’s Hb count is holding up well and his tumour growth seems to have slowed.

Who knows why these changes occur but it is good that he is still being monitored and given transfusions regularly as that must really help his quality of life. He must be feeling so much better with a count of 104 when you recall how dangerously low it got last year before Christmas!

Did you ever get an answer about the possibility of the chemo drug affecting his blood counts? Is he on any medications now?

Let’s hope he stays well on this regime.

Take care

Chris

[AEBS37]

Hi Chris,

Thank you for your fast reply.

The haematology consultant finally accepted that hubby's MDS diagnosis was due to the radio and chemotherapy that he had for his brain tumour. She said that it was unusual to have happened so soon?!?

Hubby not on any oral medication at the moment, although still having huge problems with his eczema, now has a bacterial infection all over both legs. Still battling with seborrheic dermatitis on his scalp.

He only had 1 unit of red blood cells today. I have a theory as to why his Hb level is so high. As red blood cells live for about 4 months, I wonder if the donated bloods he has had over the last few months has contained young blood cells? So, maybe they are lasting longer and just so happened to have peaked this time. A possibility I guess. I wonder if over the months, Hb levels will fluctuate. Only time will tell.

Take care,

Angela

[chris]

Hi Angela

At least you have an explanation now. Sadly, some people do get MDS following chemo- or radiotherapy given for other cancers. So sorry to hear about your husband’s various skin problems now though.That must be miserable for him. Hope some relief can be found.

Just hoping his Hb stabilises and glad he seems to be lasting well after each transfusion. Yeah -maybe he’s getting “longlife” donations?! All good news. Hope the better weather will lift your spirits. Take care

Chris

[AEBS37]

Just to let you all know, my husband Keith died 29th December '23 at home. His tumour had started growing back August '23. He was rushed to A&E beginning of October with a suspected stroke. Turned out to be the brain tumour. He was given up to three months left to live by his consultant. It was a long struggle, but now he is at peace.
Thank you for your support. I will not be visiting this group again.
Kindest regards to everyone,
Angela Elliott